Variables in the UK Transplant Registry

On this page you will find an interactive summary of variables collected for the UK Transplant Registry (UKTR). This data repository is centrally managed by NHSBT and is also known as the National Transplant Database (NTxD).

The colors have the following meaning:

Green Available quickly (up to several weeks)
Yellow Available slowly (up to several months)
Red Not available or special permision needed

A. Donor Variables (642 variables)

1. Donor basics (30 variables) -- Additionally a listing of Code E

Select ID Name Description

1
ODT donor number Format: string up to 6 charactersA. Donor Variables (642 variables)

2
Donor on ODR? Categories (Code B):
1 - No
2 - To donate (opt in)
3 - Not to donate (opt out)
4 - Appointed representative
8 - Not reported

3
Donor surname Text

4
Donor forename(s) Text

5
Case number Format: string up to 11 characters

6
Date/time notified to ODT Format: DD/MM/YYYY at HH:MM

7
Date of birth Format: DD/MM/YYYY

8
Sex Categories:
1 - Male
2 - Female

9
Age Format: NN years NN months

10
NHS number Format: string up to 10 characters

11
CHI number Format: string up to 10 characters

12
Postcode of donor residence Format: string of two parts, up to 4 and 3 characters

13
Ethnic origin Categories (Code C):
1 - White
2 - Asian or Asian-British
3 - Black or Black-British
4 - Chinese/Oriental
6 - Mixed, please specify
7 - Other, please specify
8 - Not reported
9 - Unknown
If code 6 or 7, then can be additionally specified in a separate field

14
Ethnic origin - further details Text

15
Occupation Text

16
Donor hospital Text

17
Donating hospital postcode Format: string of two parts, up to 4 and 3 characters

18
Date of admission to hospital Format: DD/MM/YYYY at HH:MM

19
Date/time of admission to Critical Care Area Format: DD/MM/YYYY at HH:MM

20
Referring unit (a unit where potential donor is being cared for, i.e. where the patient died) Categories (Code D):
11 - Intensive Care Unit (ICU) - General
12 - Intensive Care Unit (ICU) - Neurosurgical
13 - Intensive Care Unit (ICU) - Cardiothoracic
14 - Intensive Care Unit (ICU) - Specialist
15 - Intensive Care Unit (ICU) - Paediatric
16 - High Dependency Unit (HDU)
17 - General ICU/HDU/Coronary Care Unit
18 - General ICU/HDU
19 - General/Neuro ICU
20 - Accident and Emergency Department
21 - Ward - Medical
22 - Ward - Stroke Unit
23 - Ward - Neurosurgical
24 - Ward - Surgical
25 - Multiple Injuries Unit
26 - Intensive Care Unit (ICU) - Neonatal
27 - Theatre recovery
77 - Not applicable
88 - Not reported
98 - Other, please specify
If code 98 (Other), then can be additionally specified in a separate field

21
Referring unit - further details Text

22
Specialist Nurse - Organ Donation Text

23
Organ Donation Services Team Text

24
Telephone number (Specialist Nurse - Organ Donation / Organ Donation Services Team) Format: string up to 11 characters

25
Pager number (Specialist Nurse - Organ Donation / Organ Donation Services Team) Format: string up to 11 characters

26
Primary diagnosis Categories (Code E), see listing below

27
Primary diagnosis - further details Text

28
Cause of death Categories (Code E), see listing below

29
Cause of death - further details Text

30
Code E (relevant to "Primary diagnosis" and "Cause of death") Categories (Code E):
0 - Living donor
10 - Intracranial haemorrhage
11 - Intracranial thrombosis
12 - Brain tumour
13 - Hypoxic brain damage - all causes
19 - Intracranial - type unclassified (CVA)
20 - Trauma RTA - car
21 - Trauma RTA - motorbike
22 - Trauma RTA - pushbike
23 - Trauma RTA - pedestrian
24 - Trauma RTA - other
29 - Trauma RTA - unknown type
30 - Other trauma - known or suspected suicide
31 - Other trauma - accident
39 - Other trauma - unknown cause
40 - Cardiac arrest
41 - Myocardial infarction
42 - Aortic aneurysm
43 - Ischaemic heart disease
44 - Congestive heart failure
45 - Pulmonary embolism
49 - Cardiovascular - type unclassified
50 - Chronic pulmonary disease
51 - Pneumonia
52 - Asthma
53 - Respiratory failure
54 - Carbon monoxide poisoning
59 - Respiratory - type unclassified (including smoke inhalation)
60 - Cancer (other than brain tumour)
70 - Meningitis
71 - Septicaemia
72 - Infections - type unclassified
73 - Acute blood loss (hypovolaemia)
74 - Liver failure (not self poisoning)
75 - Renal failure
76 - Multi-organ failure
77 - Sudden infant death syndrome (SIDS)
78 - Burns
80 - Alcohol poisoning
81 - Paracetamol overdose
82 - Other drug overdose, please specify
85 - Self poisoning - type unclassified
88 - Not reported
90 - Other
98 - Other, please specify
99 - Unknown
If code 82 or 98, then can be additionally specified in a separate field

2. Trauma, indicating injuries (6 variables)

Select ID Name Description

31
Chest Categories:
1 - No
2 - Yes

32
Head Categories:
1 - No
2 - Yes

33
Abdominal Categories:
1 - No
2 - Yes

34
Trauma (other) Categories:
1 - No
2 - Yes
If code 2 (Yes), then can be additionally specified in a separate field

35
Trauma (other) - further details Text

36
CT scan results, if applicable Text

3. Patient measures (5 variables)

Select ID Name Description

37
Height (units: cm) Format: string up to 3 characters

38
Height (units: inches) Format: string up to 2 characters

39
Weight (units: kg) Format: string up to 3 characters

40
Weight estimated or actual Categories (Code F):
1 - Estimated
2 - Actual
88 - Not reported

41
Girth (units: cm) Format: string up to 3 characters

4. Blood group including, where known, subtypes of A (3 variables)

Select ID Name Description

42
ABO Format: string up to 3 characters

43
Rh Categories:
N - Neg
P - Pos

44
Subtype of A blood group Format: string up to 2 characters

5. Brain stem death tests (9 variables)

Select ID Name Description

45
Is the patient ventilated? Categories:
1 - No
2 - Yes

46
Date ventilation commenced Format: DD/MM/YYYY

47
Period of ventilation (if <1 day record 0) where "date ventilation commenced" is unknown (units: days) Format: string up to 2 characters

48
Brain stem death, 1st test date/time Format: DD/MM/YYYY at HH:MM

49
Brain stem death, 2nd test date/time Format: DD/MM/YYYY at HH:MM

50
Estimated retrieval time Format: DD/MM/YYYY at HH:MM

51
Pupils first noted fixed & dilated Format: DD/MM/YYYY at HH:MM

52
Is the time of coning identifiable from patient records? Categories:
1 - No
2 - Yes

53
Time of coning Format: DD/MM/YYYY at HH:MM

6. DCD donors (11 variables)

Select ID Name Description

54
Cough present? Categories:
1 - No
2 - Yes

55
Gag present? Categories:
1 - No
2 - Yes

56
Plan to extubate? Categories:
1 - No
2 - Yes

57
What treatment is being withdrawn? Categories (Code G):
1 - Continuing current level of intervention with no further escalation
2 - Reduction/withdrawal of cardorespiratory support, not extubated
3 - Withdrawal of ECMO
4 - Extubation with conservative measures to maintain airway patency
5 - Extubated, supine
6 - Other, please specify
8 - Not reported
If code 6 (Other), then can be additionally specified in a separate field

58
What treatment is being withdrawn - further details Text

59
Is the patient sedated? Categories:
1 - No
2 - Yes

60
Sedation scale (AVPU) if sedated Categories (Code H):
1 - Alert
2 - Voice
3 - Pain
4 - Unresponsive
8 - Not reported

61
Sedation - further details Text

62
GCS if not sedated Format: string up to 2 characters

63
Pupillary responses - left Categories:
1 - No
2 - Yes

64
Pupillary responses - right Categories:
1 - No
2 - Yes

7. Observations (36 variables) -- Additionally a listing of Code I

Select ID Name Description

65
Observation 1 - Date/time Format: DD/MM/YYYY at HH:MM

66
Observation 1 - Heart rate (units: beats/min) Format: string up to 3 characters

67
Observation 1 - BP reading systolic (units: mmHg) Format: string up to 3 characters

68
Observation 1 - BP reading diastolic (units: mmHg) Format: string up to 3 characters

69
Observation 1 - Temperature (units: C) Format: NN.N (precision up to one decimal point)

70
Observation 1 - CVP (units: "mmHg +/-") Format: "NN +/-" (string up to 2 characters followed by either a plus or minus sign)

71
Observation 1 - CVC line site Categories (Code I), see listing below

72
Observation 2 - Date/time Format: DD/MM/YYYY at HH:MM

73
Observation 2 - Heart rate (units: beats/min) Format: string up to 3 characters

74
Observation 2 - BP reading systolic (units: mmHg) Format: string up to 3 characters

75
Observation 2 - BP reading diastolic (units: mmHg) Format: string up to 3 characters

76
Observation 2 - Temperature (units: C) Format: NN.N (precision up to one decimal point)

77
Observation 2 - CVP (units: "mmHg +/-") Format: "NN +/-" (string up to 2 characters followed by either a plus or minus sign)

78
Observation 2 - CVC line site Categories (Code I), see listing below

79
Observation 3 - Date/time Format: DD/MM/YYYY at HH:MM

80
Observation 3 - Heart rate (units: beats/min) Format: string up to 3 characters

81
Observation 3 - BP reading systolic (units: mmHg) Format: string up to 3 characters

82
Observation 3 - BP reading diastolic (units: mmHg) Format: string up to 3 characters

83
Observation 3 - Temperature (units: C) Format: NN.N (precision up to one decimal point)

84
Observation 3 - CVP (units: "mmHg +/-") Format: "NN +/-" (string up to 2 characters followed by either a plus or minus sign)

85
Observation 3 - CVC line site Categories (Code I), see listing below

86
Observation 4 - Date/time Format: DD/MM/YYYY at HH:MM

87
Observation 4 - Heart rate (units: beats/min) Format: string up to 3 characters

88
Observation 4 - BP reading systolic (units: mmHg) Format: string up to 3 characters

89
Observation 4 - BP reading diastolic (units: mmHg) Format: string up to 3 characters

90
Observation 4 - Temperature (units: C) Format: NN.N (precision up to one decimal point)

91
Observation 4 - CVP (units: "mmHg +/-") Format: "NN +/-" (string up to 2 characters followed by either a plus or minus sign)

92
Observation 4 - CVC line site Categories (Code I), see listing below

93
Observation 5 - Date/time Format: DD/MM/YYYY at HH:MM

94
Observation 5 - Heart rate (units: beats/min) Format: string up to 3 characters

95
Observation 5 - BP reading systolic (units: mmHg) Format: string up to 3 characters

96
Observation 5 - BP reading diastolic (units: mmHg) Format: string up to 3 characters

97
Observation 5 - Temperature (units: C) Format: NN.N (precision up to one decimal point)

98
Observation 5 - CVP (units: "mmHg +/-") Format: "NN +/-" (string up to 2 characters followed by either a plus or minus sign)

99
Observation 5 - CVC line site Categories (Code I), see listing below

100
Observations - comments Text

101
Code I (relevant to "Observation - CVC line site") Categories (Code I):
10 - Right subclavian
11 - Right internal jugular
12 - Right external jugular
13 - Right femoral
14 - Right picc
20 - Left subclavian
21 - Left internal jugular
22 - Left external jugular
23 - Left femoral
24 - Left picc
88 - Not reported
97 - Not applicable

8. Blood pressure (14 variables)

Select ID Name Description

102
Is the patient normotensive? Categories:
1 - No
2 - Yes

103
Is patient supported by inotropes? Categories:
1 - No
2 - Yes

104
Hypotension Categories:
1 - No
2 - Yes
If code 2 (Yes), then can be additionally specified in a separate field

105
Hypotension - number of occasions Format: string up to 2 characters

106
Lowest BP - systolic (units: mmHg) Format: string up to 3 characters

107
Lowest BP - diastolic (units: mmHg) Format: string up to 3 characters

108
Lowest BP - duration (units: min) Format: string up to 3 characters

109
Lowest BP - date/time Format: DD/MM/YYYY at HH:MM

110
Hypertension Categories:
1 - No
2 - Yes
If code 2 (Yes), then can be additionally specified in a separate field

111
Hypertension - number of occasions Format: string up to 2 characters

112
Highest BP - systolic (units: mmHg) Format: string up to 3 characters

113
Highest BP - diastolic (units: mmHg) Format: string up to 3 characters

114
Highest BP - duration (units: min) Format: string up to 3 characters

115
Highest BP - date/time Format: DD/MM/YYYY at HH:MM

9. Ventilatory support / ABGs (13 variables)

Select ID Name Description

116
Mode of ventilation Categories (Code I):
1 - PRVC
2 - PC/VC
3 - SIMV
4 - BIPAP
5 - ASB
6 - PS
7 - CPAP
88 - Not reported
99 - Other
If code 99 (Other), then can be additionally specified in a separate field

117
Mode of ventilation - further details Text

118
FiO2 (units: %) Format: string up to 3 characters

119
pLow (units: cmH2O) Format: string up to 2 characters

120
pHigh (units: cmH2O) Format: string up to 2 characters

121
Pressure support (units: cmH2O) Format: string up to 2 characters

122
PEEP (units: cmH2O) Format: string up to 2 characters

123
Set resp rate Format: string up to 2 characters

124
Spont resp rate (patient`s actual resp rate) Format: string up to 2 characters

125
Tidal volume (units: L) Format: string up to 2 characters

126
Size of ETT or tracheostomy (units: mm) Format: NN.N (precision up to one decimal point)

127
Position of ETT or tracheostomy confirmed on CXR Categories:
1 - No
2 - Yes

128
Bronchoscopy findings Text

10. Blood gases / gas exchange (72 variables) -- Additionally a listing of Code K

Select ID Name Description

129
Blood gases - Observation 1 - Result stage Categories (Code K), see listing below

130
Blood gases - Observation 1 - Date/time Format: DD/MM/YYYY at HH:MM

131
Blood gases - Observation 1 - FiO2 (units: %) Format: string up to 3 characters

132
Blood gases - Observation 1 - PEEP (units: cmH2O) Format: string up to 2 characters

133
Blood gases - Observation 1 - Saturation (units: %) Format: NNN.N (precision up to one decimal point)

134
Blood gases - Observation 1 - pH Format: N.NN (precision up to two decimal points)

135
Blood gases - Observation 1 - PCO2 (units: KPa) Format: NN.NN (precision up to two decimal points)

136
Blood gases - Observation 1 - PO2 (units: KPa) Format: NNN.N (precision up to one decimal point)

137
Blood gases - Observation 1 - HCO3 (units: mmol/l) Format: NN.NN (precision up to two decimal points)

138
Blood gases - Observation 1 - BE +/- (units: mmol/l) Format: "+/- NN.N" (plus or minus sign followed by a number with precision up to one decimal point)

139
Blood gases - Observation 1 - Lactate (units: mmol/l) Format: string up to 2 characters

140
Blood gases - Observation 1 - PaO2 / FiO2 ratio Format: string up to 3 characters

141
Blood gases - Observation 2 - Result stage Categories (Code K), see listing below

142
Blood gases - Observation 2 - Date/time Format: DD/MM/YYYY at HH:MM

143
Blood gases - Observation 2 - FiO2 (units: %) Format: string up to 3 characters

144
Blood gases - Observation 2 - PEEP (units: cmH2O) Format: string up to 2 characters

145
Blood gases - Observation 2 - Saturation (units: %) Format: NNN.N (precision up to one decimal point)

146
Blood gases - Observation 2 - pH Format: N.NN (precision up to two decimal points)

147
Blood gases - Observation 2 - PCO2 (units: KPa) Format: NN.NN (precision up to two decimal points)

148
Blood gases - Observation 2 - PO2 (units: KPa) Format: NNN.N (precision up to one decimal point)

149
Blood gases - Observation 2 - HCO3 (units: mmol/l) Format: NN.NN (precision up to two decimal points)

150
Blood gases - Observation 2 - BE +/- (units: mmol/l) Format: "+/- NN.N" (plus or minus sign followed by a number with precision up to one decimal point)

151
Blood gases - Observation 2 - Lactate (units: mmol/l) Format: string up to 2 characters

152
Blood gases - Observation 2 - PaO2 / FiO2 ratio Format: string up to 3 characters

153
Blood gases - Observation 3 - Result stage Categories (Code K), see listing below

154
Blood gases - Observation 3 - Date/time Format: DD/MM/YYYY at HH:MM

155
Blood gases - Observation 3 - FiO2 (units: %) Format: string up to 3 characters

156
Blood gases - Observation 3 - PEEP (units: cmH2O) Format: string up to 2 characters

157
Blood gases - Observation 3 - Saturation (units: %) Format: NNN.N (precision up to one decimal point)

158
Blood gases - Observation 3 - pH Format: N.NN (precision up to two decimal points)

159
Blood gases - Observation 3 - PCO2 (units: KPa) Format: NN.NN (precision up to two decimal points)

160
Blood gases - Observation 3 - PO2 (units: KPa) Format: NNN.N (precision up to one decimal point)

161
Blood gases - Observation 3 - HCO3 (units: mmol/l) Format: NN.NN (precision up to two decimal points)

162
Blood gases - Observation 3 - BE +/- (units: mmol/l) Format: "+/- NN.N" (plus or minus sign followed by a number with precision up to one decimal point)

163
Blood gases - Observation 3 - Lactate (units: mmol/l) Format: string up to 2 characters

164
Blood gases - Observation 3 - PaO2 / FiO2 ratio Format: string up to 3 characters

165
Blood gases - Observation 4 - Result stage Categories (Code K), see listing below

166
Blood gases - Observation 4 - Date/time Format: DD/MM/YYYY at HH:MM

167
Blood gases - Observation 4 - FiO2 (units: %) Format: string up to 3 characters

168
Blood gases - Observation 4 - PEEP (units: cmH2O) Format: string up to 2 characters

169
Blood gases - Observation 4 - Saturation (units: %) Format: NNN.N (precision up to one decimal point)

170
Blood gases - Observation 4 - pH Format: N.NN (precision up to two decimal points)

171
Blood gases - Observation 4 - PCO2 (units: KPa) Format: NN.NN (precision up to two decimal points)

172
Blood gases - Observation 4 - PO2 (units: KPa) Format: NNN.N (precision up to one decimal point)

173
Blood gases - Observation 4 - HCO3 (units: mmol/l) Format: NN.NN (precision up to two decimal points)

174
Blood gases - Observation 4 - BE +/- (units: mmol/l) Format: "+/- NN.N" (plus or minus sign followed by a number with precision up to one decimal point)

175
Blood gases - Observation 4 - Lactate (units: mmol/l) Format: string up to 2 characters

176
Blood gases - Observation 4 - PaO2 / FiO2 ratio Format: string up to 3 characters

177
Blood gases - Observation 5 - Result stage Categories (Code K), see listing below

178
Blood gases - Observation 5 - Date/time Format: DD/MM/YYYY at HH:MM

179
Blood gases - Observation 5 - FiO2 (units: %) Format: string up to 3 characters

180
Blood gases - Observation 5 - PEEP (units: cmH2O) Format: string up to 2 characters

181
Blood gases - Observation 5 - Saturation (units: %) Format: NNN.N (precision up to one decimal point)

182
Blood gases - Observation 5 - pH Format: N.NN (precision up to two decimal points)

183
Blood gases - Observation 5 - PCO2 (units: KPa) Format: NN.NN (precision up to two decimal points)

184
Blood gases - Observation 5 - PO2 (units: KPa) Format: NNN.N (precision up to one decimal point)

185
Blood gases - Observation 5 - HCO3 (units: mmol/l) Format: NN.NN (precision up to two decimal points)

186
Blood gases - Observation 5 - BE +/- (units: mmol/l) Format: "+/- NN.N" (plus or minus sign followed by a number with precision up to one decimal point)

187
Blood gases - Observation 5 - Lactate (units: mmol/l) Format: string up to 2 characters

188
Blood gases - Observation 5 - PaO2 / FiO2 ratio Format: string up to 3 characters

189
Blood gases - Observation 6 - Result stage Categories (Code K), see listing below

190
Blood gases - Observation 6 - Date/time Format: DD/MM/YYYY at HH:MM

191
Blood gases - Observation 6 - FiO2 (units: %) Format: string up to 3 characters

192
Blood gases - Observation 6 - PEEP (units: cmH2O) Format: string up to 2 characters

193
Blood gases - Observation 6 - Saturation (units: %) Format: NNN.N (precision up to one decimal point)

194
Blood gases - Observation 6 - pH Format: N.NN (precision up to two decimal points)

195
Blood gases - Observation 6 - PCO2 (units: KPa) Format: NN.NN (precision up to two decimal points)

196
Blood gases - Observation 6 - PO2 (units: KPa) Format: NNN.N (precision up to one decimal point)

197
Blood gases - Observation 6 - HCO3 (units: mmol/l) Format: NN.NN (precision up to two decimal points)

198
Blood gases - Observation 6 - BE +/- (units: mmol/l) Format: "+/- NN.N" (plus or minus sign followed by a number with precision up to one decimal point)

199
Blood gases - Observation 6 - Lactate (units: mmol/l) Format: string up to 2 characters

200
Blood gases - Observation 6 - PaO2 / FiO2 ratio Format: string up to 3 characters

201
Code K (relevant to "Blood gases - Observation - Result stage") Categories (Code K):
2 - Following BSD declaration FiO2 (1.0)
3 - On referral to SNOD
4 - On referral to SNOD FiO2 (1.0)
5 - At initial assesment by retrieval team
6 - On retrieval
7 - Additional result

11. Cardiac and respiratory arrest (13 variables)

Select ID Name Description

202
Cardiac arrest? Categories:
1 - No
2 - Yes
If code 2 (Yes), then can be additionally specified in a separate field

203
Cardiac arrest - date/time Format: DD/MM/YYYY at HH:MM

204
Cardiac arrest duration (units: min) Format: string up to 3 characters

205
CPR at time of arrest? Categories:
1 - No
2 - Yes
If code 2 (Yes), then can be additionally specified in a separate field

206
CPR duration (units: min) Format: string up to 3 characters

207
Out of hospital arrest? Categories:
1 - No
2 - Yes

208
Witnessed arrest? Categories:
1 - No
2 - Yes

209
Was the patient cooled? Categories:
1 - No
2 - Yes

210
Cardiac arrest - treatment / comments / drugs Text

211
Respiratory arrest? Categories:
1 - No
2 - Yes
If code 2 (Yes), then can be additionally specified in a separate field

212
Respiratory arrest - date/time commenced Format: DD/MM/YYYY at HH:MM

213
Respiratory arrest duration (units: min) Format: string up to 3 characters

214
Respiratory arrest - treatment / comments / drugs Text

12. Investigations (5 variables) -- Additionally a listing of Code L

Select ID Name Description

215
Chest X-ray Categories (Code L), see listing below

216
Chest X-ray - date Format: DD/MM/YYYY

217
12-lead ECG Categories (Code L), see listing below

218
12-lead ECG - date Format: DD/MM/YYYY

219
If abnormal investigations (chest X-ray or 12-lead ECG) - further details Text

220
Code L (relevant to "Chest X-ray" and "12 lead ECG") Categories (Code L):
1 - No
2 - Yes, normal
3 - Yes, abnormal
8 - Missing
9 - Unknown

13. Cardiac monitoring (43 variables)

Select ID Name Description

221
Does the patient have cardiac monitoring in situ? Categories:
1 - No
2 - Yes

222
Type of cardiac monitoring used Categories (Code M):
1 - Swan Ganz
2 - LIDCO
3 - PICCO
4 - VIGILEO
5 - Transoesophageal Doppler
88 - Not reported
98 - Other
If code 98 (Other), then can be additionally specified in a separate field

223
Other type of cardiac monitoring used - further details Text

224
Cardiac monitoring - Observation 1 - Date/time Format: DD/MM/YYYY at HH:MM

225
Cardiac monitoring - Observation 1 - BP systolic (units: mmHg) Format: string up to 3 characters

226
Cardiac monitoring - Observation 1 - BP diastolic (units: mmHg) Format: string up to 3 characters

227
Cardiac monitoring - Observation 1 - CVP/RA +/- (units: mmHg) Format: "+/- NN" (plus or minus sign followed by a string up to 2 characters)

228
Cardiac monitoring - Observation 1 - CI (units: l/min/m2) Format: N.N (precision up to one decimal point)

229
Cardiac monitoring - Observation 1 - Mean CO (units: l/min) Format: NN.N (precision up to one decimal point)

230
Cardiac monitoring - Observation 1 - MPAP (units: mmHg) Format: string up to 2 characters

231
Cardiac monitoring - Observation 1 - MAP (units: mmHg) Format: string up to 3 characters

232
Cardiac monitoring - Observation 1 - PCWP/LAP +/- (units: mmHg) Format: "+/- NN" (plus or minus sign followed by a string up to 2 characters)

233
Cardiac monitoring - Observation 1 - SVO2 (units: %) Format: string up to 2 characters

234
Cardiac monitoring - Observation 2 - Date/time Format: DD/MM/YYYY at HH:MM

235
Cardiac monitoring - Observation 2 - BP systolic (units: mmHg) Format: string up to 3 characters

236
Cardiac monitoring - Observation 2 - BP diastolic (units: mmHg) Format: string up to 3 characters

237
Cardiac monitoring - Observation 2 - CVP/RA +/- (units: mmHg) Format: "+/- NN" (plus or minus sign followed by a string up to 2 characters)

238
Cardiac monitoring - Observation 2 - CI (units: l/min/m2) Format: N.N (precision up to one decimal point)

239
Cardiac monitoring - Observation 2 - Mean CO (units: l/min) Format: NN.N (precision up to one decimal point)

240
Cardiac monitoring - Observation 2 - MPAP (units: mmHg) Format: string up to 2 characters

241
Cardiac monitoring - Observation 2 - MAP (units: mmHg) Format: string up to 3 characters

242
Cardiac monitoring - Observation 2 - PCWP/LAP +/- (units: mmHg) Format: "+/- NN" (plus or minus sign followed by a string up to 2 characters)

243
Cardiac monitoring - Observation 2 - SVO2 (units: %) Format: string up to 2 characters

244
Cardiac monitoring - Observation 3 - Date/time Format: DD/MM/YYYY at HH:MM

245
Cardiac monitoring - Observation 3 - BP systolic (units: mmHg) Format: string up to 3 characters

246
Cardiac monitoring - Observation 3 - BP diastolic (units: mmHg) Format: string up to 3 characters

247
Cardiac monitoring - Observation 3 - CVP/RA +/- (units: mmHg) Format: "+/- NN" (plus or minus sign followed by a string up to 2 characters)

248
Cardiac monitoring - Observation 3 - CI (units: l/min/m2) Format: N.N (precision up to one decimal point)

249
Cardiac monitoring - Observation 3 - Mean CO (units: l/min) Format: NN.N (precision up to one decimal point)

250
Cardiac monitoring - Observation 3 - MPAP (units: mmHg) Format: string up to 2 characters

251
Cardiac monitoring - Observation 3 - MAP (units: mmHg) Format: string up to 3 characters

252
Cardiac monitoring - Observation 3 - PCWP/LAP +/- (units: mmHg) Format: "+/- NN" (plus or minus sign followed by a string up to 2 characters)

253
Cardiac monitoring - Observation 3 - SVO2 (units: %) Format: string up to 2 characters

254
Cardiac monitoring - Observation 4 - Date/time Format: DD/MM/YYYY at HH:MM

255
Cardiac monitoring - Observation 4 - BP systolic (units: mmHg) Format: string up to 3 characters

256
Cardiac monitoring - Observation 4 - BP diastolic (units: mmHg) Format: string up to 3 characters

257
Cardiac monitoring - Observation 4 - CVP/RA +/- (units: mmHg) Format: "+/- NN" (plus or minus sign followed by a string up to 2 characters)

258
Cardiac monitoring - Observation 4 - CI (units: l/min/m2) Format: N.N (precision up to one decimal point)

259
Cardiac monitoring - Observation 4 - Mean CO (units: l/min) Format: NN.N (precision up to one decimal point)

260
Cardiac monitoring - Observation 4 - MPAP (units: mmHg) Format: string up to 2 characters

261
Cardiac monitoring - Observation 4 - MAP (units: mmHg) Format: string up to 3 characters

262
Cardiac monitoring - Observation 4 - PCWP/LAP +/- (units: mmHg) Format: "+/- NN" (plus or minus sign followed by a string up to 2 characters)

263
Cardiac monitoring - Observation 4 - SVO2 (units: %) Format: string up to 2 characters

14. Echo test (9 variables)

Select ID Name Description

264
Was ECHO performed in the donor? Categories:
1 - No
2 - Yes

265
Date/time ECHO performed Format: DD/MM/YYYY at HH:MM

266
Estimated EF (units: %) Format: string up to 2 characters

267
Interventricular septum thickness (units: mm) Format: string up to 2 characters

268
Posterior wall thickness (units: mm) Format: string up to 2 characters

269
End systolic dimension (units: mm) Format: string up to 2 characters

270
End diastolic dimension (units: mm) Format: string up to 2 characters

271
Fractional shortening (units: %) Format: string up to 2 characters

272
Echo test - comments Text

15. Urine output (9 variables)

Select ID Name Description

273
Urine output - last hour (units: ml) Format: string up to 3 characters

274
Urine output - last 24 hours (units: ml) Format: string up to 5 characters

275
Urine output - last period duration (units: hr) Format: string up to 2 characters

276
Urine output - last period volume (units: ml) Format: string up to 5 characters

277
Fluid balance +/- (units: litres) Format: "+/- NN.N" (plus or minus sign followed by a number with precision up to one decimal point)

278
Urine output measured at date/time Format: DD/MM/YYYY at HH:MM

279
Has the patient received DDAVP? Categories:
1 - No
2 - Yes

280
If the patient received DDAVP, last dose (units: mcg) Format: number

281
If the patient received DDAVP, date/time of dose Format: DD/MM/YYYY at HH:MM

16. Urinalysis (14 variables)

Select ID Name Description

282
Was urinalysis performed? Categories:
1 - No
2 - Yes

283
Urinalysis - Date/time Format: DD/MM/YYYY at HH:MM

284
Urinalysis - Specific gravity Categories (Code N1):
1 - 1
2 - 1.005
3 - 1.01
4 - 1.015
5 - 1.02
6 - 1.025
7 - 1.03
88 - Not reported
99 - Unknown

285
Urinalysis - Blood Categories (Code N2):
1 - Negative
2 - Non-haemolyzed trace
3 - Non-haemolyzed moderate
4 - Haemolyzed trace
5 - Haemolyzed small (+)
6 - Haemolyzed moderate (++)
7 - Haemolyzed large (+++)
88 - Not reported
99 - Unknown

286
Urinalysis - Protein Categories (Code N3):
1 - Negative
2 - Trace
3 - 30 mg/dl (+)
4 - 100 mg/dl (++)
5 - 300 mg/dl (+++)
6 - 2000 mg/dl or more (++++)
88 - Not reported

287
Urinalysis - Glucose Categories (Code N4):
1 - Negative
2 - 100 mg/dl
3 - 250 mg/dl
4 - 500 mg/dl
5 - 1000 mg/dl
6 - 2000 mg/dl or more
88 - Not reported
99 - Unknown

288
Urinalysis - Leukocytes Categories (Code N5):
1 - Negative
2 - Trace
3 - Small (+)
4 - Moderate (++)
5 - Large (+++)
88 - Not reported
99 - Unknown

289
Urinalysis - Nitrites Categories (Code N6):
1 - Negative
2 - Positive
88 - Not reported

290
Urinalysis - Ketones Categories (Code N7):
1 - Negative
2 - Trace (5 mg/dl)
3 - Small (15 mg/dl)
4 - Moderate (40 mg/dl)
5 - Large (80 mg/dl)
6 - Large (160 mg/dl)
88 - Not reported
99 - Unknown

291
Urinalysis - Bilirubin (units: umol/l, micro-mole per litre) Categories (Code N8):
1 - Negative
2 - Small (+)
3 - Moderate (++)
4 - Large (+++)
88 - Not reported
99 - Unknown

292
Urinalysis - pH Categories (Code N9):
1 - <5.0
2 - 1.5
3 - 5.5
4 - 6
5 - 6.5
6 - 7
7 - 7.5
8 - 8
9 - 8.5
10 - >8.5
88 - Not reported
99 - Unknown

293
Urinalysis - Urobilinogen (units: mg/dl) Categories (Code N10):
1 - 0.2
2 - 1
3 - 2
4 - 4
5 - 8
88 - Not reported
99 - Unknown

294
Urinalysis - Protein/creatinine ratio (urine) (units: mg/mmol) Format: string up to 3 characters

295
Urinalysis - Albumin/creatinine ratio (units: mg/mmol) Format: string up to 3 characters

17. Intravenous fluids given (7 variables)

Select ID Name Description

296
Is fluid resuscitation ongoing? Categories:
1 - No
2 - Yes

297
Fluid resuscitation - details Text

298
Has the patient been enterally fed in the last 24 hours? Categories:
1 - No
2 - Yes

299
Haemodilution - Has the patient suffered blood loss and received high volumes of crystallised/colloid infusions? Categories:
1 - No
2 - Yes

300
Haemodilution - If yes, percentage haemodilution (units: %) Format: string up to 2 characters

301
Blood transfusions given Categories:
1 - No
2 - Yes

302
Blood transfusions - Volume during last week (all groups) (units: "units") Format: string up to 3 characters

18. Blood tests and microbiology (39 variables) -- Additionally a listing of Code O

Select ID Name Description

303
Were tests performed on a pre-transfusion blood sample? Categories:
1 - No
2 - Yes

304
If the potential donor is a child has the mother had microbiology screening? (See INF947) Categories:
1 - No
2 - Yes

305
Pre-transfusion / not transfused tests - Hard copy received? Categories:
1 - No
2 - Yes

306
Pre-transfusion / not transfused tests - Witness name (if verbal reporting) Text

307
Post-transfusion tests - Hard copy received? Categories:
1 - No
2 - Yes

308
Post-transfusion tests - Witness name (if verbal reporting) Text

309
Results - Pre-transfusion / not transfused - HBsAg Categories (Code O), see listing below

310
Results - Pre-transfusion / not transfused - HBcAb Categories (Code O), see listing below

311
Results - Pre-transfusion / not transfused - HCV Categories (Code O), see listing below

312
Results - Pre-transfusion / not transfused - HIV Categories (Code O), see listing below

313
Results - Pre-transfusion / not transfused - CMV Categories (Code O), see listing below

314
Results - Pre-transfusion / not transfused - EBV Categories (Code O), see listing below

315
Results - Pre-transfusion / not transfused - HTLV Categories (Code O), see listing below

316
Results - Pre-transfusion / not transfused - Toxo Categories (Code O), see listing below

317
Results - Pre-transfusion / not transfused - Syphilis Categories (Code O), see listing below

318
Results - Pre-transfusion / not transfused - Malaria Categories (Code O), see listing below

319
Results - Pre-transfusion / not transfused - T Cruzi Categories (Code O), see listing below

320
Results - Post-transfusion - HBsAg Categories (Code O), see listing below

321
Results - Post-transfusion - HBcAb Categories (Code O), see listing below

322
Results - Post-transfusion - HCV Categories (Code O), see listing below

323
Results - Post-transfusion - HIV Categories (Code O), see listing below

324
Results - Post-transfusion - CMV Categories (Code O), see listing below

325
Results - Post-transfusion - EBV Categories (Code O), see listing below

326
Results - Post-transfusion - HTLV Categories (Code O), see listing below

327
Results - Post-transfusion - Toxo Categories (Code O), see listing below

328
Results - Post-transfusion - Syphilis Categories (Code O), see listing below

329
Results - Post-transfusion - Malaria Categories (Code O), see listing below

330
Results - Post-transfusion - T Cruzi Categories (Code O), see listing below

331
Results - Maternal - HBsAg Categories (Code O), see listing below

332
Results - Maternal - HBcAb Categories (Code O), see listing below

333
Results - Maternal - HCV Categories (Code O), see listing below

334
Results - Maternal - HIV Categories (Code O), see listing below

335
Results - Maternal - CMV Categories (Code O), see listing below

336
Results - Maternal - EBV Categories (Code O), see listing below

337
Results - Maternal - HTLV Categories (Code O), see listing below

338
Results - Maternal - Toxo Categories (Code O), see listing below

339
Results - Maternal - Syphilis Categories (Code O), see listing below

340
Results - Maternal - Malaria Categories (Code O), see listing below

341
Results - Maternal - T Cruzi Categories (Code O), see listing below

342
Code O (relevant to "Blood tests and microbiology - Results") Categories (Code O):
1 - Negative
2 - Positive
3 - Indeterminate
6 - Test result awaited / sent for testing
7 - Not tested
8 - Not reported
9 - Unknown

19. Pregnancy (5 variables) -- Additionally a listing of Code P

Select ID Name Description

343
Has pregnancy testing been performed? Categories:
1 - No
2 - Yes

344
Urine pregnancy test performed Categories:
1 - No
2 - Yes

345
Pregnancy results from urine test Categories (Code P), see listing below

346
Blood pregnancy test performed Categories:
1 - No
2 - Yes

347
Pregnancy results from blood test Categories (Code P), see listing below

348
Code P (relevant to "Pregnancy test results") Categories (Code P):
1 - Positive
2 - Negative
3 - Result indeterminate
4 - Result awaited
8 - Not reported

20. Blood results (39 variables)

Select ID Name Description

349
Blood results - Observation 1 - Result stage Categories (Code Q):
1 - On admission
3 - On referral to SNOD
6 - On retrieval
7 - Additional result

350
Blood results - Observation 1 - Sample date/time Format: DD/MM/YYYY at HH:MM

351
Blood results - Observation 1 - Haemoglobin (units: g/dl) Format: NN.N (precision up to one decimal point)

352
Blood results - Observation 1 - Serial haematocrit (units: g/dl) Format: NN.N (precision up to one decimal point)

353
Blood results - Observation 1 - White cell count (units: x10^9/l) Format: NN.N (precision up to one decimal point)

354
Blood results - Observation 1 - Platelets (units: x10^9/l) Format: string up to 3 characters

355
Blood results - Observation 1 - Prothrombin time (units: seconds) Format: NN.N (precision up to one decimal point)

356
Blood results - Observation 1 - APTT (units: seconds) Format: string up to 3 characters

357
Blood results - Observation 1 - INR Format: string up to 3 characters

358
Blood results - Observation 1 - CRP (units: mg/l) Format: string up to 2 characters

359
Blood results - Observation 1 - HbA1C (units: mmol/mol) Format: string up to 2 characters

360
Blood results - Observation 1 - Troponin T (units: ug/l, micro-gram per litre) Format: string up to 4 characters

361
Blood results - Observation 1 - Troponin I (units: ug/l, micro-gram per litre) Format: string up to 4 characters

362
Blood results - Observation 2 - Result stage Categories (Code Q):
1 - On admission
3 - On referral to SNOD
6 - On retrieval
7 - Additional result

363
Blood results - Observation 2 - Sample date/time Format: DD/MM/YYYY at HH:MM

364
Blood results - Observation 2 - Haemoglobin (units: g/dl) Format: NN.N (precision up to one decimal point)

365
Blood results - Observation 2 - Serial haematocrit (units: g/dl) Format: NN.N (precision up to one decimal point)

366
Blood results - Observation 2 - White cell count (units: x10^9/l) Format: NN.N (precision up to one decimal point)

367
Blood results - Observation 2 - Platelets (units: x10^9/l) Format: string up to 3 characters

368
Blood results - Observation 2 - Prothrombin time (units: seconds) Format: NN.N (precision up to one decimal point)

369
Blood results - Observation 2 - APTT (units: seconds) Format: string up to 3 characters

370
Blood results - Observation 2 - INR Format: string up to 3 characters

371
Blood results - Observation 2 - CRP (units: mg/l) Format: string up to 2 characters

372
Blood results - Observation 2 - HbA1C (units: mmol/mol) Format: string up to 2 characters

373
Blood results - Observation 2 - Troponin T (units: ug/l, micro-gram per litre) Format: string up to 4 characters

374
Blood results - Observation 2 - Troponin I (units: ug/l, micro-gram per litre) Format: string up to 4 characters

375
Blood results - Observation 3 - Result stage Categories (Code Q):
1 - On admission
3 - On referral to SNOD
6 - On retrieval
7 - Additional result

376
Blood results - Observation 3 - Sample date/time Format: DD/MM/YYYY at HH:MM

377
Blood results - Observation 3 - Haemoglobin (units: g/dl) Format: NN.N (precision up to one decimal point)

378
Blood results - Observation 3 - Serial haematocrit (units: g/dl) Format: NN.N (precision up to one decimal point)

379
Blood results - Observation 3 - White cell count (units: x10^9/l) Format: NN.N (precision up to one decimal point)

380
Blood results - Observation 3 - Platelets (units: x10^9/l) Format: string up to 3 characters

381
Blood results - Observation 3 - Prothrombin time (units: seconds) Format: NN.N (precision up to one decimal point)

382
Blood results - Observation 3 - APTT (units: seconds) Format: string up to 3 characters

383
Blood results - Observation 3 - INR Format: string up to 3 characters

384
Blood results - Observation 3 - CRP (units: mg/l) Format: string up to 2 characters

385
Blood results - Observation 3 - HbA1C (units: mmol/mol) Format: string up to 2 characters

386
Blood results - Observation 3 - Troponin T (units: ug/l, micro-gram per litre) Format: string up to 4 characters

387
Blood results - Observation 3 - Troponin I (units: ug/l, micro-gram per litre) Format: string up to 4 characters

21. Liver function tests (43 variables)

Select ID Name Description

388
Liver function test 1 - Result stage Categories (Code Q):
1 - On admission
3 - On referral to SNOD
6 - On retrieval
7 - Additional result

389
Liver function test 1 - Sample date/time Format: DD/MM/YYYY at HH:MM

390
Liver function test 1 - Total protein (units: g/l) Format: string up to 3 characters

391
Liver function test 1 - AST (units: iu/l) Format: string up to 3 characters

392
Liver function test 1 - Alk Phos (units: iu/l) Format: string up to 5 characters

393
Liver function test 1 - Phosphate (units: mmol/l) Format: N.NN (precision up to two decimal points)

394
Liver function test 1 - Albumin (units: g/l) Format: string up to 3 characters

395
Liver function test 1 - ALT (units: iu/l) Format: string up to 5 characters

396
Liver function test 1 - Glucose (units: mmol/l) Format: NN.N (precision up to one decimal point)

397
Liver function test 1 - LDH (units: iu/l) Format: string up to 5 characters

398
Liver function test 1 - Bilirubin (units: umol/l, micro-mole per litre) Format: string up to 4 characters

399
Liver function test 1 - Gamma GT (units: iu/l) Format: string up to 5 characters

400
Liver function test 1 - Calcium (mmol/l) Format: N.NN (precision up to two decimal points)

401
Liver function test 1 - Amylase (iu/l) Format: string up to 4 characters

402
Liver function test 2 - Result stage Categories (Code Q):
1 - On admission
3 - On referral to SNOD
6 - On retrieval
7 - Additional result

403
Liver function test 2 - Sample date/time Format: DD/MM/YYYY at HH:MM

404
Liver function test 2 - Total protein (units: g/l) Format: string up to 3 characters

405
Liver function test 2 - AST (units: iu/l) Format: string up to 3 characters

406
Liver function test 2 - Alk Phos (units: iu/l) Format: string up to 5 characters

407
Liver function test 2 - Phosphate (units: mmol/l) Format: N.NN (precision up to two decimal points)

408
Liver function test 2 - Albumin (units: g/l) Format: string up to 3 characters

409
Liver function test 2 - ALT (units: iu/l) Format: string up to 5 characters

410
Liver function test 2 - Glucose (units: mmol/l) Format: NN.N (precision up to one decimal point)

411
Liver function test 2 - LDH (units: iu/l) Format: string up to 5 characters

412
Liver function test 2 - Bilirubin (units: umol/l, micro-mole per litre) Format: string up to 4 characters

413
Liver function test 2 - Gamma GT (units: iu/l) Format: string up to 5 characters

414
Liver function test 2 - Calcium (mmol/l) Format: N.NN (precision up to two decimal points)

415
Liver function test 2 - Amylase (iu/l) Format: string up to 4 characters

416
Liver function test 3 - Result stage Categories (Code Q):
1 - On admission
3 - On referral to SNOD
6 - On retrieval
7 - Additional result

417
Liver function test 3 - Sample date/time Format: DD/MM/YYYY at HH:MM

418
Liver function test 3 - Total protein (units: g/l) Format: string up to 3 characters

419
Liver function test 3 - AST (units: iu/l) Format: string up to 3 characters

420
Liver function test 3 - Alk Phos (units: iu/l) Format: string up to 5 characters

421
Liver function test 3 - Phosphate (units: mmol/l) Format: N.NN (precision up to two decimal points)

422
Liver function test 3 - Albumin (units: g/l) Format: string up to 3 characters

423
Liver function test 3 - ALT (units: iu/l) Format: string up to 5 characters

424
Liver function test 3 - Glucose (units: mmol/l) Format: NN.N (precision up to one decimal point)

425
Liver function test 3 - LDH (units: iu/l) Format: string up to 5 characters

426
Liver function test 3 - Bilirubin (units: umol/l, micro-mole per litre) Format: string up to 4 characters

427
Liver function test 3 - Gamma GT (units: iu/l) Format: string up to 5 characters

428
Liver function test 3 - Calcium (units: mmol/l) Format: N.NN (precision up to two decimal points)

429
Liver function test 3 - Amylase (units: iu/l) Format: string up to 4 characters

430
Other liver function tests Text

22. Urea and electrolytes (31 variables)

Select ID Name Description

431
Urea and electrolytes test 1 - Result stage Categories (Code Q):
1 - On admission
3 - On referral to SNOD
6 - On retrieval
7 - Additional result

432
Urea and electrolytes test 1 - Sample date/time Format: DD/MM/YYYY at HH:MM

433
Urea and electrolytes test 1 - Sodium (units: mmol/l) Format: string up to 3 characters

434
Urea and electrolytes test 1 - Potassium (units: mmol/l) Format: N.N (precision up to one decimal point)

435
Urea and electrolytes test 1 - Blood urea (units: mmol/l) Format: NN.N (precision up to one decimal point)

436
Urea and electrolytes test 1 - Serum creatinine (units: umol/l, micro-mole per litre) Format: string up to 4 characters

437
Urea and electrolytes test 1 - eGFR (units: ml/min/1.73m2) Format: string up to 3 characters

438
Urea and electrolytes test 2 - Result stage Categories (Code Q):
1 - On admission
3 - On referral to SNOD
6 - On retrieval
7 - Additional result

439
Urea and electrolytes test 2 - Sample date/time Format: DD/MM/YYYY at HH:MM

440
Urea and electrolytes test 2 - Sodium (units: mmol/l) Format: string up to 3 characters

441
Urea and electrolytes test 2 - Potassium (units: mmol/l) Format: N.N (precision up to one decimal point)

442
Urea and electrolytes test 2 - Blood urea (units: mmol/l) Format: NN.N (precision up to one decimal point)

443
Urea and electrolytes test 2 - Serum creatinine (units: umol/l, micro-mole per litre) Format: string up to 4 characters

444
Urea and electrolytes test 2 - eGFR (units: ml/min/1.73m2) Format: string up to 3 characters

445
Urea and electrolytes test 3 - Result stage Categories (Code Q):
1 - On admission
3 - On referral to SNOD
6 - On retrieval
7 - Additional result

446
Urea and electrolytes test 3 - Sample date/time Format: DD/MM/YYYY at HH:MM

447
Urea and electrolytes test 3 - Sodium (units: mmol/l) Format: string up to 3 characters

448
Urea and electrolytes test 3 - Potassium (units: mmol/l) Format: N.N (precision up to one decimal point)

449
Urea and electrolytes test 3 - Blood urea (units: mmol/l) Format: NN.N (precision up to one decimal point)

450
Urea and electrolytes test 3 - Serum creatinine (units: umol/l, micro-mole per litre) Format: string up to 4 characters

451
Urea and electrolytes test 3 - eGFR (units: ml/min/1.73m2) Format: string up to 3 characters

452
Urea and electrolytes test 4 - Result stage Categories (Code Q):
1 - On admission
3 - On referral to SNOD
6 - On retrieval
7 - Additional result

453
Urea and electrolytes test 4 - Sample date/time Format: DD/MM/YYYY at HH:MM

454
Urea and electrolytes test 4 - Sodium (units: mmol/l) Format: string up to 3 characters

455
Urea and electrolytes test 4 - Potassium (units: mmol/l) Format: N.N (precision up to one decimal point)

456
Urea and electrolytes test 4 - Blood urea (units: mmol/l) Format: NN.N (precision up to one decimal point)

457
Urea and electrolytes test 4 - Serum creatinine (units: umol/l, micro-mole per litre) Format: string up to 4 characters

458
Urea and electrolytes test 4 - eGFR (units: ml/min/1.73m2) Format: string up to 3 characters

459
Creatinine prior to admission (within 5 years) Text

460
Date of pre-admission creatinine Format: MM/YYYY

461
Renal replacement therapy Categories:
1 - No
2 - Yes

23. Past medical history (29 variables)

Select ID Name Description

462
History obtained from? Categories (Code R):
1 - Family only
2 - Family & GP
9 - Unknown
8 - Not reported

463
History of UTI? Categories:
1 - No
2 - Yes

464
History of liver disease? Categories:
1 - No
2 - Yes

465
History of cancer or malignancy? Categories:
1 - No
2 - Yes

466
History of cardiac disease? Categories:
1 - No
2 - Yes

467
History of pulmonary disease? Categories:
1 - No
2 - Yes

468
History of hypertension? Categories:
1 - No
2 - Yes

469
Number of anti-hypertensives at time of admission? Format: string up to 1 character

470
Units of alcohol per day? Categories (Code S):
1 - Non-drinker of alcohol
2 - Drinks rarely/occasionally (<1u/day)
3 - Light drinker (1-2u/day)
4 - Moderate drinker (3-6u/day)
5 - Heavy drinker (7-9u/day)
6 - Very heavy drinker (>9u/day)
88 - Not reported
98 - Stopped drinking alcohol, please provide detail
99 - Alcohol consumption unknown

471
Period of time in relation to alcohol use? Format: NN years NN months

472
Notes on alcohol consumption Text

473
History of diabetes? Categories:
1 - No
2 - Yes

474
Insulin, medication or diet controlled? Categories:
1 - Insulin +/- medication
2 - Medication
3 - Diet
99 - Unknown

475
Date diagnosed Format: MM/YYYY

476
Family history of diabetes? Categories:
1 - No
2 - Yes

477
Family history of diabetes - If yes, type Categories:
1 - Type I
2 - Type II
3 - TI & TII
9 - Unknown

478
Current or past cigarette smoker? Categories:
1 - No
2 - Yes

479
Current or past cigarette smoker - If yes, number of cigarettes per day Format: string up to 2 characters

480
Period of time in relation to smoking? Format: NN years NN months

481
Date stopped smoking (if applicable) Format: NN years NN months

482
History of drug abuse? Categories:
1 - No
2 - Yes

483
History of drug abuse - If yes, details Text

484
History of allergies? Categories:
1 - No
2 - Yes

485
History of allergies - If yes, details Text

486
Other relevant history? Categories:
1 - No
2 - Yes

487
Other relevant history - If yes, details Text

488
Are you aware of any medical and social contraindications to tissue/organ donation by this donor? Categories:
1 - No
2 - Yes

489
Any medical and social contraindications to tissue/organ donation by this donor - If yes, details Text

490
General comments Text

24. Infections (18 variables)

Select ID Name Description

491
Is there a history of any infection during this admission? Categories:
1 - No
2 - Yes

492
A history of any infection during this admission - If yes, details Text

493
Infection - Urine Categories:
1 - No
2 - Yes

494
Infection - Blood Categories:
1 - No
2 - Yes

495
Blood cultures sent? Categories:
1 - No
2 - Yes

496
Results of blood cultures Text

497
Infection - CNS/CSF Categories:
1 - No
2 - Yes

498
Infection - Chest Categories:
1 - No
2 - Yes

499
Infections - Other Categories:
1 - No
2 - Yes

500
History of aspiration Categories:
1 - No
2 - Yes

501
Was the donor treated for chest infection or aspiration? Categories (Code U):
1 - No
2 - Infection
3 - Aspiration
4 - Infection & aspiration
9 - Unknown
8 - Not reported

502
Secretions Text

503
Was purulent sputum present in the donor during assessment? (purulent sputum is thick yellow/green aspirate not white secretions) Categories:
1 - No
2 - Yes

504
Donor sputum microscopy done? Categories:
1 - No
2 - Yes

505
Donor sputum microscopy - If yes and reported - Gram positive cocci Categories:
1 - No
2 - Yes

506
Donor sputum microscopy - If yes and reported - Gram positive bacilli/rods Categories:
1 - No
2 - Yes

507
Donor sputum microscopy - If yes and reported - Gram negative cocci Categories:
1 - No
2 - Yes

508
Donor sputum microscopy - If yes and reported - Gram negative bacilli/rods Categories:
1 - No
2 - Yes

25. Drugs (100 variables)

Select ID Name Description

509
Methylprednisolone - Administered Categories:
1 - No
2 - Yes

510
Methylprednisolone - Dose (decimal fractions ignored) (units: mg) Format: string up to 4 characters

511
Methylprednisolone - Date/time administered Format: DD/MM/YYYY at HH:MM

512
Dopamine - Administered Categories:
1 - No
2 - Yes

513
Dopamine - Dose (decimal fractions ignored) (units: mg) Format: string up to 4 characters

514
Dopamine - Diluent (decimal fractions ignored) (units: ml) Format: string up to 2 characters

515
Dopamine - Date/time commenced Format: DD/MM/YYYY at HH:MM

516
Dopamine - Current rate of infusion (units: ml/hr) Format: NN.N (precision up to one decimal point)

517
Dopamine - Current dosage (units: ug/kg/min, micro-gram per kilogram per minute) Format: NN.NN (precision up to two decimal points)

518
Dopamine - Date/time of maximum dosage Format: DD/MM/YYYY at HH:MM

519
Dopamine - Maximum rate of infusion (units: ml/hr) Format: NN.N (precision up to one decimal point)

520
Dopamine - Maximum dosage (units: ug/kg/min, micro-gram per kilogram per minute) Format: NN.NN (precision up to two decimal points)

521
Dobutamine - Administered Categories:
1 - No
2 - Yes

522
Dobutamine - Dose (decimal fractions ignored) (units: mg) Format: string up to 4 characters

523
Dobutamine - Diluent (decimal fractions ignored) (units: ml) Format: string up to 2 characters

524
Dobutamine - Date/time commenced Format: DD/MM/YYYY at HH:MM

525
Dobutamine - Current rate of infusion (units: ml/hr) Format: NN.N (precision up to one decimal point)

526
Dobutamine - Current dosage (units: ug/kg/min, micro-gram per kilogram per minute) Format: NN.NN (precision up to two decimal points)

527
Dobutamine - Date/time of maximum dosage Format: DD/MM/YYYY at HH:MM

528
Dobutamine - Maximum rate of infusion (units: ml/hr) Format: NN.N (precision up to one decimal point)

529
Dobutamine - Maximum dosage (units: ug/kg/min, micro-gram per kilogram per minute) Format: NN.NN (precision up to two decimal points)

530
Adrenaline - Administered Categories:
1 - No
2 - Yes

531
Adrenaline - Dose (decimal fractions ignored) (units: mg) Format: string up to 4 characters

532
Adrenaline - Diluent (decimal fractions ignored) (units: ml) Format: string up to 2 characters

533
Adrenaline - Date/time commenced Format: DD/MM/YYYY at HH:MM

534
Adrenaline - Current rate of infusion (units: ml/hr) Format: NN.N (precision up to one decimal point)

535
Adrenaline - Current dosage (units: ug/kg/min, micro-gram per kilogram per minute) Format: NN.NN (precision up to two decimal points)

536
Adrenaline - Date/time of maximum dosage Format: DD/MM/YYYY at HH:MM

537
Adrenaline - Maximum rate of infusion (units: ml/hr) Format: NN.N (precision up to one decimal point)

538
Adrenaline - Maximum dosage (units: ug/kg/min, micro-gram per kilogram per minute) Format: NN.NN (precision up to two decimal points)

539
Noradrenaline - Administered Categories:
1 - No
2 - Yes

540
Noradrenaline - Dose (decimal fractions ignored) (units: mg) Format: string up to 4 characters

541
Noradrenaline - Diluent (decimal fractions ignored) (units: ml) Format: string up to 2 characters

542
Noradrenaline - Date/time commenced Format: DD/MM/YYYY at HH:MM

543
Noradrenaline - Current rate of infusion (units: ml/hr) Format: NN.N (precision up to one decimal point)

544
Noradrenaline - Current dosage (units: ug/kg/min, micro-gram per kilogram per minute) Format: NN.NN (precision up to two decimal points)

545
Noradrenaline - Date/time of maximum dosage Format: DD/MM/YYYY at HH:MM

546
Noradrenaline - Maximum rate of infusion (units: ml/hr) Format: NN.N (precision up to one decimal point)

547
Noradrenaline - Maximum dosage (units: ug/kg/min, micro-gram per kilogram per minute) Format: NN.NN (precision up to two decimal points)

548
Vasopressin (arginine-vasopressin, pitressin) - Administered Categories:
1 - No
2 - Yes

549
Vasopressin (arginine-vasopressin, pitressin) - Dose (decimal fractions ignored) (units: mg) Format: string up to 4 characters

550
Vasopressin (arginine-vasopressin, pitressin) - Diluent (decimal fractions ignored) (units: ml) Format: string up to 2 characters

551
Vasopressin (arginine-vasopressin, pitressin) - Was a loading dose administered? Categories:
1 - No
2 - Yes

552
Vasopressin (arginine-vasopressin, pitressin) - Was a loading dose administered? - If yes, dose (units: units) Format: string up to 4 characters

553
Vasopressin (arginine-vasopressin, pitressin) - Was an infusion administered? Categories:
1 - No
2 - Yes

554
Vasopressin (arginine-vasopressin, pitressin) - Was an infusion administered? - If yes, dose (units: units) Format: string up to 4 characters

555
Vasopressin (arginine-vasopressin, pitressin) - Date/time commenced Format: DD/MM/YYYY at HH:MM

556
Vasopressin (arginine-vasopressin, pitressin) - Current rate of infusion (units: ml/hr) Format: NN.N (precision up to one decimal point)

557
Vasopressin (arginine-vasopressin, pitressin) - Date/time of maximum rate of infusion Format: DD/MM/YYYY at HH:MM

558
Vasopressin (arginine-vasopressin, pitressin) - Maximum rate of infusion (units: ml/hr) Format: NN.N (precision up to one decimal point)

559
Other cardioactive drug 1 - Administered Categories:
1 - No
2 - Yes

560
Other cardioactive drug 1 - Name Text

561
Other cardioactive drug 1 - Dose (decimal fractions ignored) (units: mg) Format: string up to 4 characters

562
Other cardioactive drug 1 - Diluent (decimal fractions ignored) (units: ml) Format: string up to 2 characters

563
Other cardioactive drug 1 - Date/time commenced Format: DD/MM/YYYY at HH:MM

564
Other cardioactive drug 1 - Current rate of infusion (units: ml/hr) Format: NN.N (precision up to one decimal point)

565
Other cardioactive drug 1 - Current dosage (units: ug/kg/min, micro-gram per kilogram per minute) Format: NN.NN (precision up to two decimal points)

566
Other cardioactive drug 1 - Date/time of maximum dosage Format: DD/MM/YYYY at HH:MM

567
Other cardioactive drug 1 - Maximum rate of infusion (units: ml/hr) Format: NN.N (precision up to one decimal point)

568
Other cardioactive drug 1 - Maximum dosage (units: ug/kg/min, micro-gram per kilogram per minute) Format: NN.NN (precision up to two decimal points)

569
Other cardioactive drug 2 - Administered Categories:
1 - No
2 - Yes

570
Other cardioactive drug 2 - Name Text

571
Other cardioactive drug 2 - Dose (decimal fractions ignored) (units: mg) Format: string up to 4 characters

572
Other cardioactive drug 2 - Diluent (decimal fractions ignored) (units: ml) Format: string up to 2 characters

573
Other cardioactive drug 2 - Date/time commenced Format: DD/MM/YYYY at HH:MM

574
Other cardioactive drug 2 - Current rate of infusion (units: ml/hr) Format: NN.N (precision up to one decimal point)

575
Other cardioactive drug 2 - Current dosage (units: ug/kg/min, micro-gram per kilogram per minute) Format: NN.NN (precision up to two decimal points)

576
Other cardioactive drug 2 - Date/time of maximum dosage Format: DD/MM/YYYY at HH:MM

577
Other cardioactive drug 2 - Maximum rate of infusion (units: ml/hr) Format: NN.N (precision up to one decimal point)

578
Other cardioactive drug 2 - Maximum dosage (units: ug/kg/min, micro-gram per kilogram per minute) Format: NN.NN (precision up to two decimal points)

579
Tri-iodothyronine (T3) - Administered Categories:
1 - No
2 - Yes

580
Tri-iodothyronine (T3) - Dose (decimal fractions ignored) (units: mg) Format: string up to 4 characters

581
Tri-iodothyronine (T3) - Diluent (decimal fractions ignored) (units: ml) Format: string up to 2 characters

582
Tri-iodothyronine (T3) - Was a loading dose administered? Categories:
1 - No
2 - Yes

583
Tri-iodothyronine (T3) - Was a loading dose administered? - If yes, dose (units: units) Format: string up to 4 characters

584
Tri-iodothyronine (T3) - Was an infusion administered? Categories:
1 - No
2 - Yes

585
Tri-iodothyronine (T3) - Was an infusion administered? - If yes, dose (units: units) Format: string up to 4 characters

586
Tri-iodothyronine (T3) - Date/time commenced Format: DD/MM/YYYY at HH:MM

587
Tri-iodothyronine (T3) - Current rate of infusion (units: ml/hr) Format: NN.N (precision up to one decimal point)

588
Tri-iodothyronine (T3) - Date/time of maximum rate of infusion Format: DD/MM/YYYY at HH:MM

589
Tri-iodothyronine (T3) - Maximum rate of infusion (units: ml/hr) Format: NN.N (precision up to one decimal point)

590
Insulin - Administered Categories:
1 - No
2 - Yes

591
Insulin - Dose (decimal fractions ignored) (units: mg) Format: string up to 4 characters

592
Insulin - Diluent (decimal fractions ignored) (units: ml) Format: string up to 2 characters

593
Insulin - Was a loading dose administered? Categories:
1 - No
2 - Yes

594
Insulin - Was a loading dose administered? - If yes, dose (units: units) Format: string up to 4 characters

595
Insulin - Blood glucose (units: mmol/l) Text

596
Insulin - Was an infusion administered? Categories:
1 - No
2 - Yes

597
Insulin - Was an infusion administered? - If yes, dose (units: units) Format: string up to 4 characters

598
Insulin - Date/time commenced Format: DD/MM/YYYY at HH:MM

599
Insulin - Current rate of infusion (units: ml/hr) Format: NN.N (precision up to one decimal point)

600
Insulin - Date/time of maximum rate of infusion Format: DD/MM/YYYY at HH:MM

601
Insulin - Maximum rate of infusion (units: ml/hr) Format: NN.N (precision up to one decimal point)

602
Were steroid doses administered prior to, or post, death declared following brain stem death tests (i.e. for the management of the brain-injured patient)? Categories:
1 - No
2 - Yes

603
Other drugs given Categories:
10 - Acyclivor / Zovirax
15 - Zithromycin / Zithromax
6 - Benzylpenicilin / Crystapen
7 - Cefotaxime / Claforan
8 - Cefuroxime / Zinaxef, Zinnat
1 - Desmopressin / Ddavp
4 - Dexamethasone / Decadron
17 - Eythromycin / Erymax, Erythrocin, Ilosone
16 - Fluconazole / Diflucan
14 - Frusemide / Laside
9 - Gentamycin / Cidomycin, Genticin
12 - Acetylcysteine / Parvolex
13 - Propofol / Diprivan
11 - Rifampicin / Rifadin, Rimactane
5 - Insulin
2 - Pitressin
3 - T3 (Tri-iodothyronine)

604
Other drugs - Frequency Categories:
1 - OD
2 - BD
3 - TDS
4 - QDS
5 - PRN
6 - STAT
88 - Not reported
98 - Other

605
Other drugs - Route Categories:
1 - IV
2 - IM
3 - SC
4 - PO
5 - NG
6 - NJ
7 - OG
8 - PEG
9 - PR
10 - NEB
11 - INH
12 - TOP
88 - Not reported
98 - Other

606
Other drugs - Dose Text

607
Other drugs - Date commenced Format: DD/MM/YYYY

608
Other drugs - Date ceased (if applicable) Format: DD/MM/YYYY

26. Consent / authorisation (14 variables) -- Additionally a listing of 1 read-only variable ("Donors in Scotland - Question prefix")

Select ID Name Description

609
SN-OD who obtained consent/authorisation Text

610
Donors in England / Wales / Northern Ireland - Question 1 - There is also an opportunity to support transplantation/healthcare through the removal of samples, for example blood, urine, and/or tissue samples from specific organs which can then be used in approved research projects. Do the family consent to this? Categories:
1 - No
2 - Yes

611
Donors in England / Wales / Northern Ireland - Question 2 - On occasion, organs/tissues the family have agreed to donate may be found to be unsuitable for transplant. However, these organs/tissues can be used in research (or other Scheduled Purposes) to gain a better understanding on how we can improve healthcare in the future. Do the family consent to this? Categories:
1 - No
2 - Yes

612
Donors in England / Wales / Northern Ireland - Question 3 - Organs/tissues/materials may also be donated and used to improve future healthcare. Do the family consent to the removal of specific organs/ tissues/samples for research or other Scheduled Purposes? Categories:
1 - No
2 - Yes
If code 2 (Yes), then can be additionally specified in a separate field titled "Consent / authorisation - Additional information"

613
Donors in Scotland - Question prefix - "Have the next of kin authorised that specified organs and/or samples derived from specific organs:" Read-only text

614
Donors in Scotland - Question 1 - May be stored and used for ethically approved research? Categories:
1 - No
2 - Yes
3 - Not discussed therefore authorisation not obtained

615
Donors in Scotland - Question 2 - May be removed and stored for the purposes of specific ethically approved research projects described in the additional information box below? Categories:
1 - No
2 - Yes
3 - Not discussed therefore authorisation not obtained

616
Donors in Scotland - Question 3 - May be stored and used for education/training? Categories:
1 - No
2 - Yes
3 - Not discussed therefore authorisation not obtained

617
Donors in Scotland - Question 4 - May be stored and used for quality assurance / performance assessment? Categories:
1 - No
2 - Yes
3 - Not discussed therefore authorisation not obtained

618
Donors in Scotland - Question 5 - May be stored and used for audit of clinical services? Categories:
1 - No
2 - Yes
3 - Not discussed therefore authorisation not obtained

619
Donors in Scotland - Question 6 - Have the next of kin authorised that following either completion of education / training / quality assessment / research or if found unsuitable for clinical use all organs and/or samples derived from specific organs or tissue will be disposed of in a safe and lawful way? Categories:
1 - No
2 - Yes
3 - Not discussed therefore authorisation not obtained

620
Consent / authorisation - Additional information Text

621
Has Coroner / Procurator Fiscal given consent for donation? Categories:
1 - No
2 - Yes
If code 2 (Yes), then can be additionally specified in a separate field

622
Type of Coroner / Procurator Fiscal consent for donation Categories (Code W):
1 - No
2 - Yes
3 - Not discussed therefore authorisation not obtained
8 - Not reported

623
Details of any instructions or restrictions stated by the Coroner / Procurator Fiscal and/or the Pathologist Text

27. Organs/tissues consented for / authorised (23 variables)

Select ID Name Description

624
All abdominal organs (EWNI) Categories:
1 - No
2 - Yes

625
All cardiothoracic organs (EWNI) Categories:
1 - No
2 - Yes

626
Kidneys Categories:
1 - No
2 - Yes

627
Pancreas Categories:
1 - No
2 - Yes

628
Pancreas for islet cells Categories:
1 - No
2 - Yes

629
Liver Categories:
1 - No
2 - Yes

630
Liver for hepatocytes Categories:
1 - No
2 - Yes

631
Bowel Categories:
1 - No
2 - Yes

632
Heart Categories:
1 - No
2 - Yes

633
Lungs Categories:
1 - No
2 - Yes

634
Other solid organs Categories:
1 - No
2 - Yes
If code 2 (Yes), then can be additionally specified in a separate field

635
Other solid organs - further details Text

636
All tissue (EWNI) Categories:
1 - No
2 - Yes

637
Eyes Categories:
1 - No
2 - Yes

638
Skin Categories:
1 - No
2 - Yes

639
Heart for tissue donation Categories:
1 - No
2 - Yes

640
Bone Categories:
1 - No
2 - Yes

641
Tendons Categories:
1 - No
2 - Yes

642
Meniscus Categories:
1 - No
2 - Yes

643
Blood vessels Categories:
1 - No
2 - Yes

644
Other tissue Categories:
1 - No
2 - Yes
If code 2 (Yes), then can be additionally specified in a separate field

645
Other tissue - further details Text

646
Any other comments Text

28. Tissue retrieval (2 variables)

Select ID Name Description

647
Anticipated date/time of body to mortuary Format: DD/MM/YYYY at HH:MM

648
Number of blood samples with body Format: string up to N (not fixed) characters

B. Liver Transplant (262 variables)

1. Liver recipient details (23 variables) -- Additionally a listing of Code Liver-A

Select ID Name Description

649
Recipient ODT number Format: string up to 6 characters

650
Transplant centre Text

651
Centre code Format: string up to 5 characters

652
Hospital number Text

653
Recipient age Format: number

654
Recipient sex Categories:
1 - Male
2 - Female

655
Recipient height (units: cm) Format: number

656
Recipient weight (units: kg) Format: number

657
Recipient ABO blood group including, where known, subtypes of A Format: string up to 3 characters

658
Recipient Rh blood group Categories:
N - Neg
P - Pos

659
Recipient ethnic origin Categories:
1 - White
2 - Asian or Asian British
3 - Black or Black British
4 - Chinese/Oriental
6 - Mixed, please specify
7 - Other, please specify
9 - Unknown
If code 6 or 7 then can be additionally specified in a separate field

660
Recipient ethnic origin - further details Text

661
Recipient virology - CMV status Categories:
1 - Negative
2 - Positive
7 - Not tested
9 - Unknown

662
Recipient virology - HIV status Categories:
1 - Negative
2 - Positive
7 - Not tested
9 - Unknown

663
Recipient virology - EBV (IgG) status Categories:
1 - Negative
2 - Positive
7 - Not tested
9 - Unknown

664
Recipient liver failure grading Categories:
1 - Hyperacute
2 - Acute
3 - Subacute
4 - Not acute
Based on time interval between onset of jaundice and encephalopathy
Hyperacute: 0-7 days; Acute: 8-28 days; Subacute: 29-72 days
(O`Grady JG, Schalm SW, Williams R; Acute Liver Failure: redefining the syndromes. Lancet 1993; 342: 273-275)

665
Recipient number of liver diseases Format: string up to 1 character

666
Recipient liver diseases - In order of indication - Primary disease 1 Categories (Code Liver-A), see listing below

667
Recipient liver diseases - In order of indication - Primary disease 2 Categories (Code Liver-A), see listing below

668
Recipient liver diseases - In order of indication - Primary disease 3 Categories (Code Liver-A), see listing below

669
Recipient liver diseases - If code 13 (Hepatitis B cirrhosis), is HDV present Categories:
1 - No
2 - Yes
9 - Unknown

670
Recipient liver diseases - If code 41 (Non-cirrhotic hepatocellular carcinoma) or 42 (Cirrhotic hepatocellular carcinoma), is the tumour of fibrolamellar type Categories:
1 - No
2 - Yes
9 - Unknown

671
Recipient liver diseases - further details Text

672
Code Liver-A (relevant to "Recipient liver diseases") Categories (Code Liver-A):
11 - Primary biliary cirrhosis
14 - Primary sclerosing cholangitis
19 - Alcoholic liver disease
12 - Autoimmune chronic active liver disease
17 - Cryptogenic cirrhosis
24 - Hepatitis C cirrhosis
13 - Hepatitis B cirrhosis
27 - Acute hepatic failure - Budd-Chiari syndrome
30 - Acute hepatic failure - serologically indeterminate
34 - Acute hepatic failure - Wilson`s disease
35 - Acute hepatic failure - HAV
36 - Acute hepatic failure - HBV
28 - Acute hepatic failure - other virus
37 - Acute hepatic failure - paracetamol hepatotoxicity
38 - Acute hepatic failure - other drug toxicity
39 - Acute hepatic failure - other, please specify
41 - Cancer - Hepatocellular carcinoma - non-cirrhotic
42 - Cancer - Hepatocellular carcinoma - cirrhotic
43 - Cancer - Cholangiocarcinoma
44 - Cancer - Hepatoblastoma
45 - Cancer - Secondary hepatic malignancy
47 - Cancer - Other primary hepatic malignancy, please specify
15 - Metabolic liver disease - Alpha-1-antitrypsin deficiency
22 - Metabolic liver disease - Wilson`s disease
26 - Metabolic liver disease - Non-alcoholic fatty liver disease
50 - Metabolic liver disease - Other metabolic liver disease, please specify
52 - Metabolic liver disease - Primary oxalosis
54 - Metabolic liver disease - Hyperlipidaemia
56 - Metabolic liver disease - Tyrosinaemia
57 - Metabolic liver disease - Familial amyloidosis
61 - Metabolic liver disease - Hereditary haemochromatosis
62 - Metabolic liver disease - Glycogen storage disease
16 - Other liver disease - Budd-Chiari syndrome (not code 27)
18 - Other liver disease - Secondary biliary cirrhosis
20 - Other liver disease - Biliary atresia
21 - Other liver disease - Congenital hepatic fibrosis
23 - Other liver disease - Congenital biliary disease
25 - Other liver disease - Paediatric cholestatic liver disease, please specify
48 - Other liver disease - Benign liver tumour
51 - Other liver disease - Cystic fibrosis
53 - Other liver disease - Graft versus host disease
55 - Other liver disease - Trauma
60 - Other liver disease - Polycystic liver disease
63 - Other liver disease - Progressive familial intrahepatic cholestasis
64 - Other liver disease - Neonatal haemochromatosis
66 - Other liver disease - Hypercholesterolaemia
67 - Other liver disease - Urea cycle disorder
68 - Other liver disease - Crigler-Najjar syndrome
69 - Other liver disease - Cholesterol ester storage disease
83 - Other liver disease - Mitochondrial disease
84 - Other liver disease - Alagilles syndrome
85 - Other liver disease - Neonatal sclerosing cholangitis
86 - Other liver disease - Other neonatal cholestasis
98 - Other liver disease - Other, please specify
99 - Other liver disease - Unknown
71 - Retransplantation - Acute rejection
72 - Retransplantation - Chronic rejection
73 - Retransplantation - Primary non-function
75 - Retransplantation - Non-thrombotic infarction
76 - Retransplantation - Ductopenic rejection
77 - Retransplantation - Recurrent disease
78 - Retransplantation - Biliary complications
79 - Retransplantation - Hepatic artery thrombosis
80 - Retransplantation - Early graft dysfunction
81 - Retransplantation - Acute vascular occlusion - venous
82 - Retransplantation - Acute vascular occlusion - artery and venous
If code 25, 39, 47, 50, or 98 then can be additionally specified in a separate field

2. Clinical status prior to liver transplant (40 variables)

Select ID Name Description

673
Life style activity score Categories:
1 - Able to carry out normal activity without restriction
2 - Only restricted in physically strenuous activity
3 - Can move freely; capable of self care; unable to do any form of work
4 - Only capable of limited self care; confined mostly to bed or chair
5 - Completely reliant on nursing/medical care
7 - Aged five years or less

674
Patient location Categories:
1 - Outpatient
2 - Ward
3 - ICU/HDU

675
Ventilated Categories:
1 - No
2 - Yes

676
Renal support Categories:
1 - Haemodialysis
2 - Haemofiltration
3 - Not required

677
Encephalopathy grade Categories:
0 - Not present
1 - Compromised; altered mood/behaviour; psychometric defects
2 - Drowsy; inappropriate behaviour
3 - Stuporous but speaking and obeying simple commands; inarticulate speech; marked confusion
4 - Coma; cannot be aroused

678
Previous upper abdominal surgery Categories:
1 - No
2 - Yes

679
Oesophageal varices Categories:
1 - Large
2 - Small
3 - Not present
9 - Unknown

680
Variceal haemorrhage Categories:
1 - No previous variceal bleed
2 - Previous variceal bleed

681
If previous variceal haemorrhage, indicate Categories:
1 - No therapy
2 - Beta-blockade
3 - Endoscopic therapy
4 - Surgical shunt
5 - TIPS

682
Inotrope therapy Categories:
1 - No
2 - Yes

683
Inotrope therapy - If yes, please indicate type Categories:
1 - Dopamine
2 - Adrenaline
3 - Noradrenaline
4 - Terlipressin
5 - Other

684
Current ascites Categories:
1 - No
2 - Mild
3 - Moderate
4 - Severe

685
Portal vein patency Categories:
1 - Not patent
2 - Patent

686
Prior spontaneous bacterial peritonitis Categories:
1 - No
2 - Yes

687
Hypertension Categories:
1 - No
2 - Yes

688
Opiate usage Categories:
1 - Previous
2 - Current
3 - None

689
Diuretic therapy Categories:
1 - No
2 - Yes

690
ICP monitor Categories:
1 - Normal pressure
2 - Raised pressure
3 - Not used

691
Pyrexial Categories:
1 - No
2 - Yes

692
Sepsis confirmed Categories:
1 - No
2 - Yes

693
Sepsis confirmed - If yes, please indicate site Categories:
1 - Sputum
2 - Blood
3 - Urine
4 - Ascites/drain fluid
5 - Wound
7 - Other

694
Cardiovascular disease - Prior cardiac disease Categories:
1 - No
2 - Yes

695
Cardiovascular disease - Current angina Categories:
1 - No
2 - Yes

696
Cardiovascular disease - Current angina - If YES, prior/current treatment Categories:
1 - Drugs
2 - Stent
3 - CABG
4 - Other

697
Cardiovascular disease - Cerebrovascular disease Categories:
1 - No
2 - Yes

698
Cardiovascular disease - Symptomatic peripheral vascular disease Categories:
1 - No
2 - Yes

699
Is the patient diabetic Categories:
1 - No
2 - Yes

700
Is the patient diabetic - If YES, year of diagnosis Format: string up to 4 characters

701
Is the patient diabetic - Cause Categories:
1 - Type I
2 - Type II
3 - Other (eg pancreatectomy)

702
Is the patient diabetic - Cause - If code 3 (Other), please specify Text

703
Is the patient diabetic - Treatment Categories:
1 - Diet
2 - Tablets
3 - Insulin

704
Previous malignancy Categories:
1 - No
2 - Yes, one
3 - Yes, multiple
9 - Unknown

705
Previous malignancy - If YES, provide details of most relevant - Site of malignancy Text

706
Previous malignancy - If YES, provide details of most relevant - Type of malignancy Text

707
Previous malignancy - If YES, provide details of most relevant - Diagnosis date Format: MM/YYYY

708
Smoking - Pipe/cigars Categories:
1 - No
2 - Yes

709
Smoking - Cigarettes Categories:
1 - No
2 - Yes
3 - Ex-smoker

710
Smoking - Cigarettes - If YES, number per day (cigarettes only) Format: string up to 2 characters

711
Smoking - Cigarettes - If EX-SMOKER, years since stop (to nearest year, 6 months = 1 year) Format: string up to 2 characters

712
Smoking - Cigarettes - Total exposure in pack years (1 pack year = 20 cigarettes per day for 1 year) Format: string up to 2 characters

3. Investigations immediately prior to liver transplant (26 variables)

Select ID Name Description

713
Haemoglobin, Hb (units: g/dl) Format: NN.N (precision up to one decimal point)

714
White blood cells, WBC (units: x10^9/l) Format: NNN.N (precision up to one decimal point)

715
Platelets (units: x10^9/l) Format: string up to 4 characters

716
Serum urea (units: mmol/l) Format: NNN.N (precision up to one decimal point)

717
Serum creatinine (units: umol/l, micro-mole per litre) Format: string up to 4 characters

718
Serum albumin (units: g/l) Format: string up to 2 characters

719
INR Format: NN.N (precision up to one decimal point)

720
Prothrombin time (units: seconds) Format: string up to 3 characters

721
Serum bilirubin (units: umol/l, micro-mole per litre) Format: string up to 4 characters

722
Serum sodium, Na (units: mmol/l) Format: string up to 3 characters

723
Serum potassium, K (units: mmol/l) Format: N.N (precision up to one decimal point)

724
Arterial pO2 (units: KPa) Format: NN.N (precision up to one decimal point)

725
AFP level (units: iu/ml) Format: string up to 5 characters

726
pH Format: N.NN (precision up to two decimal points)

727
Virology results - Antigens - HBV DNA Categories:
1 - Negative (-)
2 - Positive (+)
7 - Not done
9 - Unknown

728
Virology results - Antigens - HBs AG Categories:
1 - Negative (-)
2 - Positive (+)
7 - Not done
9 - Unknown

729
Virology results - Antigens - HBe AG Categories:
1 - Negative (-)
2 - Positive (+)
7 - Not done
9 - Unknown

730
Virology results - Antigens - HCV RNA (PCR) Categories:
1 - Negative (-)
2 - Positive (+)
7 - Not done
9 - Unknown

731
Virology results - Antibodies - Anti HBclgM Categories:
1 - Negative (-)
2 - Positive (+)
7 - Not done
9 - Unknown

732
Virology results - Antibodies - Anti HBs Categories:
1 - Negative (-)
2 - Positive (+)
7 - Not done
9 - Unknown

733
Virology results - Antibodies - Anti HBe Categories:
1 - Negative (-)
2 - Positive (+)
7 - Not done
9 - Unknown

734
Virology results - Antibodies - Anti HCV Categories:
1 - Negative (-)
2 - Positive (+)
7 - Not done
9 - Unknown

735
Virology results - Antibodies - Anti DELTA Categories:
1 - Negative (-)
2 - Positive (+)
7 - Not done
9 - Unknown

736
Virology results - Antibodies - Anti CMV Categories:
1 - Negative (-)
2 - Positive (+)
7 - Not done
9 - Unknown

737
Virology results - Antibodies - Anti HSV Categories:
1 - Negative (-)
2 - Positive (+)
7 - Not done
9 - Unknown

738
Virology results - Antibodies - Anti HIV Categories:
1 - Negative (-)
2 - Positive (+)
7 - Not done
9 - Unknown

4. Criteria for selection onto the transplant list (43 variables)

Select ID Name Description

739
Criteria set 1 - Chronic liver disease or failure Categories:
1 - No
2 - Yes

740
Criteria set 1 - Chronic liver disease or failure - If YES, is there an associated hepatocellular carcinoma (HCC) Categories:
1 - No
2 - Yes

741
Criteria set 2 - Hepatocellular carcinoma (HCC) Categories:
1 - No
2 - Yes

742
Criteria set 2 - Hepatocellular carcinoma (HCC) - If YES, number of tumours Format: string up to 1 character

743
Criteria set 2 - All tumour(s) <=5cm Categories:
1 - No
2 - Yes

744
Criteria set 2 - All tumour(s) <=5cm - If YES, maximum size of tumour(s) - Tumour 1 (units: cm) Format: N.N (precision up to one decimal point)

745
Criteria set 2 - All tumour(s) <=5cm - If YES, maximum size of tumour(s) - Tumour 2 (units: cm) Format: N.N (precision up to one decimal point)

746
Criteria set 2 - All tumour(s) <=5cm - If YES, maximum size of tumour(s) - Tumour 3 (units: cm) Format: N.N (precision up to one decimal point)

747
Criteria set 2 - All tumour(s) <=5cm - If YES, maximum size of tumour(s) - Tumour 4 (units: cm) Format: N.N (precision up to one decimal point)

748
Criteria set 2 - All tumour(s) <=5cm - If YES, maximum size of tumour(s) - Tumour 5 (units: cm) Format: N.N (precision up to one decimal point)

749
Criteria set 2 - Tumour >5cm and <=7cm Categories:
1 - No
2 - Yes

750
Criteria set 2 - Tumour >5cm and <=7cm - If YES, maximum dimensions (units: cm) Format: N.N (precision up to one decimal point)

751
Criteria set 2 - Tumour >5cm and <=7cm - If YES, date diagnosed Format: DD/MM/YYYY

752
Criteria set 2 - Tumour >5cm and <=7cm - If YES, date of 6 month assessment Format: DD/MM/YYYY

753
Criteria set 2 - Tumour >5cm and <=7cm - If YES, maximum dimensions at 6 month assessment (units: cm) Format: N.N (precision up to one decimal point)

754
Criteria set 2 - Radiological evidence of vascular invasion Categories:
1 - No
2 - Yes

755
Criteria set 2 - Biopsy confirmation of tumour(s) Categories:
1 - No
2 - Yes

756
Criteria set 2 - Tumour rupture Categories:
1 - No
2 - Yes

757
Criteria set 2 - Maximum AFP level recorded (units: iu/ml) Format: string up to 5 characters

758
Criteria set 3 - A variant syndrome Categories:
1 - No
2 - Yes

759
Criteria set 3 - A variant syndrome - If YES, a) Diuretic resistant ascites Categories:
1 - No
2 - Yes

760
Criteria set 3 - A variant syndrome - If YES, a) Diuretic resistant ascites - If YES, diuretics Categories:
1 - No
2 - Yes

761
Criteria set 3 - A variant syndrome - If YES, a) Diuretic resistant ascites - If YES, paracentesis Categories:
1 - No
2 - Yes

762
Criteria set 3 - A variant syndrome - If YES, a) Diuretic resistant ascites - If YES, TIPS Categories:
1 - No
2 - Yes

763
Criteria set 3 - A variant syndrome - If YES, a) Diuretic resistant ascites - If YES, Prior spontaneous bacterial peritonitis Categories:
1 - No
2 - Yes

764
Criteria set 3 - A variant syndrome - If YES, b) Hepatopulmonary syndrome Categories:
1 - No
2 - Yes

765
Criteria set 3 - A variant syndrome - If YES, b) Hepatopulmonary syndrome - If YES, alveolar arterial oxygen gradient (units: mmHg) Format: string up to 2 characters

766
Criteria set 3 - A variant syndrome - If YES, b) Hepatopulmonary syndrome - If YES, calculated shunt fraction (units: %) Format: string up to 2 characters

767
Criteria set 3 - A variant syndrome - If YES, c) Chronic hepatic encephalopathy Categories:
1 - No
2 - Yes

768
Criteria set 3 - A variant syndrome - If YES, c) Chronic hepatic encephalopathy - If YES, number of admissions in last year due to hepatic encephalopathy Format: string up to 2 characters

769
Criteria set 3 - A variant syndrome - If YES, d) Persistent and intractable pruritus Categories:
1 - No
2 - Yes

770
Criteria set 3 - A variant syndrome - If YES, d) Persistent and intractable pruritus - If YES, therapy tried - Cholestyramine Categories:
1 - No
2 - Yes

771
Criteria set 3 - A variant syndrome - If YES, d) Persistent and intractable pruritus - If YES, therapy tried - UDCA Categories:
1 - No
2 - Yes

772
Criteria set 3 - A variant syndrome - If YES, d) Persistent and intractable pruritus - If YES, therapy tried - Rifampicin Categories:
1 - No
2 - Yes

773
Criteria set 3 - A variant syndrome - If YES, d) Persistent and intractable pruritus - If YES, therapy tried - Ondansetron Categories:
1 - No
2 - Yes

774
Criteria set 3 - A variant syndrome - If YES, d) Persistent and intractable pruritus - If YES, therapy tried - Naltrexone Categories:
1 - No
2 - Yes

775
Criteria set 3 - A variant syndrome - If YES, e) Familial amyloidosis Categories:
1 - No
2 - Yes

776
Criteria set 3 - A variant syndrome - If YES, f) Primary hyperlipidaemia Categories:
1 - No
2 - Yes

777
Criteria set 3 - A variant syndrome - If YES, g) Polycystic liver disease Categories:
1 - No
2 - Yes

778
Criteria set 3 - A variant syndrome - If YES, h) Recurrent cholangitis Categories:
1 - No
2 - Yes

779
Criteria set 3 - A variant syndrome - If YES, i) Other Categories:
1 - No
2 - Yes

780
Criteria set 3 - A variant syndrome - If YES, i) Other - If YES, please specify Text

781
Criteria set 3 - A variant syndrome - If YES, i) Other - If YES, date of agreement Format: DD/MM/YYYY

5. Transplant details (24 variables)

Select ID Name Description

782
Date of transplant Text

783
Transplant number Format: number
1 - First liver transplant

784
Organ grafted Categories:
1 - Whole
2 - Reduced
3 - Split
4 - Auxiliary

785
Transplant type Categories:
1 - Orthotopic
2 - Heterotopic

786
Preservation fluid Categories:
20 - UW (ViaSpan)
30 - Marshall`s (Soltran)
80 - Celsoir
90 - HTK (Custodial)
98 - Other
If code 98 (Other), then can be additionally specified in a separate field

787
Preservation fluid - further details Text

788
Donor organ appearance (judged by implanting surgeon) Categories:
1 - Healthy
2 - Suboptimal

789
Hepatic artery Categories:
1 - Single
2 - Accessory

790
Cold ischaemic time Format: HH:MM
99:99 - Unknown

791
Veno-venous bypass time Format: HH:MM
00:00 - Not used
99:99 - Unknown

792
Operative reperfusion time (Liver out of ice -> reperfusion with blood) Format: HH:MM
99:99 - Unknown

793
Biliary anastomosis Categories:
1 - No stent
2 - T-tube
3 - Roux
4 - Stent

794
Hepatic artery anastomosis Categories:
1 - Single
2 - Multiple

795
Anti-fibrinolytic therapy used Categories:
1 - No
2 - Yes

796
Intraoperative death Categories:
1 - No
2 - Yes

797
Intraoperative death - If yes, please specify cause of death Text

798
Blood products - Intraoperatively - Blood (units: units) Format: string up to 3 characters

799
Blood products - Intraoperatively - Fresh frozen plasma (units: units) Format: string up to 3 characters

800
Blood products - Intraoperatively - Platelets (units: units) Format: string up to 3 characters

801
Blood products - Intraoperatively - Cryoprecipitate (units: units) Format: string up to 3 characters

802
Blood products - First 48 hours post op - Blood (units: units) Format: string up to 3 characters

803
Blood products - First 48 hours post op - Fresh frozen plasma (units: units) Format: string up to 3 characters

804
Blood products - First 48 hours post op - Platelets (units: units) Format: string up to 3 characters

805
Blood products - First 48 hours post op - Cryoprecipitate (units: units) Format: string up to 3 characters

6. 3 month follow-up (64 variables)

Select ID Name Description

806
Date of the 3 month clinical assessment for the recipient Format: DD/MM/YYYY

807
Follow-up details - Has the graft failed? Categories:
1 - No
2 - Yes

808
Follow-up details - Has the graft failed? - If YES, please give a) Date of failure (give date of retransplant or death) Format: DD/MM/YYYY

809
Follow-up details - Has the graft failed? - If YES, please give b) Cause of failure Categories:
410 - Acute rejection
420 - Chronic rejection
430 - Primary non-function
440 - Acute vascular occlusion
450 - Non-thrombotic infarction
460 - Ductopenic rejection
470 - Recurrent disease
480 - Biliary complications
490 - Recipient died, death NOT due to graft failure
498 - Other identified cause of failure
499 - Unknown

810
Follow-up details - Has the graft failed? - If "cause of failure" code is OTHER (498), further details Text

811
Follow-up details - Has the recipient died? Categories:
1 - No
2 - Yes

812
Follow-up details - Has the recipient died? - If YES, please give a) Date of death Format: DD/MM/YYYY

813
Follow-up details - Has the recipient died? - If YES, please give b) Cause of death Categories:
11 - Cardiothoracic - Myocardial ischaemia and infarction
12 - Cardiothoracic - Hyperkalaemia
13 - Cardiothoracic - Haemorrhagic pericarditis
15 - Cardiothoracic - Sudden unexplained cardiac death
16 - Cardiothoracic - Hypertensive cardiac failure
17 - Cardiothoracic - Hypokalaemia
18 - Cardiothoracic - Fluid overload
19 - Cardiothoracic - Elevated PVR/Pulmonary hypertension
20 - Cardiothoracic - Airway dehiscence
75 - Cardiothoracic - Early graft dysfunction
76 - Cardiothoracic - Cardiac tamponade
14 - Cardiothoracic - Other causes of cardiac failure
77 - Cardiothoracic - ARDS
78 - Cardiothoracic - Respiratory failure
21 - Vascular - Pulmonary embolus
22 - Vascular - Cerebro-vascular accident
24 - Vascular - Haemorrhage from graft site
25 - Vascular - Haemorrhage from vascular access or dialysis circuit
26 - Vascular - Haemorrhage from ruptured vascular aneurysm (not Code 22 or 23)
27 - Vascular - Haemorrhage from surgery (not Codes 23, 24 or 26)
28 - Vascular - Other haemorrhage (not Codes 23-27)
30 - Infection - Pulmonary infection (protozoal)
31 - Infection - Pulmonary infection (bacterial)
32 - Infection - Pulmonary infection (viral)
33 - Infection - Pulmonary infection (fungal)
34 - Infection - Infections elsewhere (except viral hepatitis see Code 41 and 42)
35 - Infection - Septicaemia
36 - Infection - Tuberculosis (lung)
37 - Infection - Tuberculosis (elsewhere)
38 - Infection - Generalized viral infection
39 - Infection - Peritonitis (not Code 70)
41 - Liver disease - Liver, due to hepatitis B virus
42 - Liver disease - Liver, other viral hepatitis
43 - Liver disease - Liver, drug toxicity
44 - Liver disease - Cirrhosis, not viral
45 - Liver disease - Cystic liver disease
46 - Liver disease - Liver failure, cause unknown
23 - Gastro-intestinal - Gastro-intestinal haemorrhage
29 - Gastro-intestinal - Mesenteric infarction
62 - Gastro-intestinal - Pancreatitis
70 - Gastro-intestinal - Sclerosing (or adhesive) peritoneal disease
71 - Gastro-intestinal - Perforation of peptic ulcer
72 - Gastro-intestinal - Perforation of colon
51 - Social - Patient refused further treatment
52 - Social - Suicide
53 - Social - Therapy ceased for any other reason
47 - Miscellaneous - Renal failure
48 - Miscellaneous - Recurrent primary disease, benign
49 - Miscellaneous - Recurrent primary disease, malignant
61 - Miscellaneous - Uraemia caused by graft failure
63 - Miscellaneous - Bone marrow depression
64 - Miscellaneous - Cachexia
66 - Miscellaneous - Lymphoid malignant disease possibly induced by immunosuppressive therapy
67 - Miscellaneous - Lymphoid malignant disease not induced by immunosuppressive therapy
69 - Miscellaneous - Dementia
73 - Miscellaneous - Non-lymphoid malignant disease possibly induced by immunosuppressive therapy
74 - Miscellaneous - Non-lymphoid malignant disease not induced by immunosuppressive therapy
79 - Miscellaneous - Multi-system failure
81 - Accident - Accident related to treatment
82 - Accident - Accident unrelated to treatment
90 - Donor organ failure
98 - Other identified cause of death
99 - Unknown

814
Follow-up details - Has the recipient died? - If "recipient died" code is OTHER (98), further details Text

815
Follow-up details - Has the recipient died? - If YES, please give c) Was the patient relisted prior to death? Categories:
1 - No
2 - Yes

816
Clinical status - Life style activity score at 3 months post transplant Categories:
1 - Able to carry out normal activity without restriction
2 - Only restricted in physically strenuous activity
3 - Can move freely. Capable of self care. Unable to do any form of work
4 - Only capable of limited self care. Confined mostly to bed or chair
5 - Completely reliant on nursing/medical care

817
HLA data - HLA-A, BROAD 1 Text

818
HLA data - HLA-A, SPLIT 1 Text

819
HLA data - HLA-A, BROAD 2 Text

820
HLA data - HLA-A, SPLIT 2 Text

821
HLA data - HLA-B, BROAD 1 Text

822
HLA data - HLA-B, SPLIT 1 Text

823
HLA data - HLA-B, BROAD 2 Text

824
HLA data - HLA-B, SPLIT 2 Text

825
HLA data - HLA-B, BW4/BW6 Text

826
HLA data - HLA-DR, BROAD 1 Text

827
HLA data - HLA-DR, SPLIT 1 Text

828
HLA data - HLA-DR, BROAD 2 Text

829
HLA data - HLA-DR, SPLIT 2 Text

830
HLA data - HLA-DR, DR51/52/53 Text

831
HLA data - HLA-DQ, BROAD 1 Text

832
HLA data - HLA-DQ, SPLIT 1 Text

833
HLA data - HLA-DQ, BROAD 2 Text

834
HLA data - HLA-DQ, SPLIT 2 Text

835
HLA data - OTHER LOCI, BROAD 1 Text

836
HLA data - OTHER LOCI, SPLIT 1 Text

837
HLA data - OTHER LOCI, BROAD 2 Text

838
HLA data - OTHER LOCI, SPLIT 2 Text

839
HLA data - Direct T cell cross match performed? Categories:
1 - No
2 - Yes

840
HLA data - Direct T cell cross match performed? - If YES, please give the result Categories:
1 - Negative
2 - Positive

841
Immunosuppression - Current immunosuppression (functioning grafts only) - Cyclosporin A Categories:
1 - No
2 - Yes

842
Immunosuppression - Current immunosuppression (functioning grafts only) - Prednisolone Categories:
1 - No
2 - Yes

843
Immunosuppression - Current immunosuppression (functioning grafts only) - Azathioprine Categories:
1 - No
2 - Yes

844
Immunosuppression - Current immunosuppression (functioning grafts only) - FK 506 Categories:
1 - No
2 - Yes

845
Immunosuppression - Current immunosuppression (functioning grafts only) - Mycophenolate Mofetil Categories:
1 - No
2 - Yes

846
Immunosuppression - Current immunosuppression (functioning grafts only) - Other Categories:
1 - No
2 - Yes

847
Immunosuppression - Current immunosuppression (functioning grafts only) - Other - If Yes, please specify Text

848
Immunosuppression - Number of treated rejection episodes since transplant (biopsy proven) (all grafts) (none = 0) Format: string up to 2 characters

849
Immunosuppression - Monoclonal or polyclonal antibodies used at any stage? (all grafts) Categories:
1 - No
2 - Yes

850
Immediate post-transplant data (all grafts) - Days ventilated Format: string up to 2 characters

851
Immediate post-transplant data (all grafts) - Days in ITU Format: string up to 3 characters

852
Immediate post-transplant data (all grafts) - Date of initial discharge (not discharged following this transplant = 99/99/9999) Format: DD/MM/YYYY

853
Immediate post-transplant data (all grafts) - Renal status Categories:
1 - No or minor renal impairment
2 - Required transient renal filtration
3 - Short-term dialysis
4 - Long-term dialysis

854
Immediate post-transplant data (all grafts) - Complications - Hepatic artery thrombosis Categories:
1 - No
2 - Yes

855
Immediate post-transplant data (all grafts) - Complications - Portal vein thrombosis Categories:
1 - No
2 - Yes

856
Immediate post-transplant data (all grafts) - Complications - IVC/hepatic vein occlusion Categories:
1 - No
2 - Yes

857
Immediate post-transplant data (all grafts) - Complications - Haemorrhage requiring reoperation Categories:
1 - No
2 - Yes

858
Immediate post-transplant data (all grafts) - Complications - Biliary tract leaks Categories:
1 - No leak
2 - Leak not treated
3 - Leak requiring reoperation
4 - Other, eg radiological intervention

859
Immediate post-transplant data (all grafts) - Complications - Biliary tract stricture requiring intervention Categories:
1 - No
2 - Yes

860
Immediate post-transplant data (all grafts) - Complications - Biliary tract stricture requiring intervention - If YES, please indicate treatment Categories:
1 - Reoperated
2 - Balloon dilatation
3 - Stenting

861
Immediate post-transplant data (all grafts) - CMV infection Categories:
1 - No
2 - Yes

862
Immediate post-transplant data (all grafts) - Fungal infection Categories:
1 - No
2 - Yes

863
Immediate post-transplant data (all grafts) - Post-operative sepsis confirmed? Categories:
1 - No
2 - Yes

864
Immediate post-transplant data (all grafts) - Post-operative sepsis confirmed? - Site - Sputum Categories:
1 - No
2 - Yes

865
Immediate post-transplant data (all grafts) - Post-operative sepsis confirmed? - Site - Blood Categories:
1 - No
2 - Yes

866
Immediate post-transplant data (all grafts) - Post-operative sepsis confirmed? - Site - Urine Categories:
1 - No
2 - Yes

867
Immediate post-transplant data (all grafts) - Post-operative sepsis confirmed? - Site - Ascites/drain fluid Categories:
1 - No
2 - Yes

868
Immediate post-transplant data (all grafts) - Post-operative sepsis confirmed? - Site - Wound Categories:
1 - No
2 - Yes

869
Immediate post-transplant data (all grafts) - Post-operative sepsis confirmed? - Site - Other Categories:
1 - No
2 - Yes

7. Annual follow-up (42 variables)

Select ID Name Description

870
Date of the annual clinical assessment for the recipient Format: DD/MM/YYYY

871
Follow-up details - Has the graft failed? Categories:
1 - No
2 - Yes

872
Follow-up details - Has the graft failed? - If YES, please give a) Date of failure (give date of retransplant or death) Format: DD/MM/YYYY

873
Follow-up details - Has the graft failed? - If YES, please give b) Cause of failure Categories:
410 - Acute rejection
420 - Chronic rejection
441 - Vascular occlusion
450 - Non-thrombotic infarction
460 - Ductopenic rejection
470 - Recurrent disease
480 - Biliary complications
490 - Recipient died, death NOT due to graft failure
498 - Other identified cause of failure
499 - Unknown

874
Follow-up details - Has the graft failed? - If "cause of failure" code is OTHER (498), further details Text

875
Follow-up details - Has the recipient died? Categories:
1 - No
2 - Yes

876
Follow-up details - Has the recipient died? - If YES, please give a) Date of death Format: DD/MM/YYYY

877
Follow-up details - Has the recipient died? - If YES, please give b) Cause of death Categories:
11 - Cardiothoracic - Myocardial ischaemia and infarction
12 - Cardiothoracic - Hyperkalaemia
13 - Cardiothoracic - Haemorrhagic pericarditis
15 - Cardiothoracic - Sudden unexplained cardiac death
16 - Cardiothoracic - Hypertensive cardiac failure
17 - Cardiothoracic - Hypokalaemia
18 - Cardiothoracic - Fluid overload
19 - Cardiothoracic - Elevated PVR/Pulmonary hypertension
20 - Cardiothoracic - Airway dehiscence
75 - Cardiothoracic - Early graft dysfunction
76 - Cardiothoracic - Cardiac tamponade
14 - Cardiothoracic - Other causes of cardiac failure
77 - Cardiothoracic - ARDS
78 - Cardiothoracic - Respiratory failure
21 - Vascular - Pulmonary embolus
22 - Vascular - Cerebro-vascular accident
24 - Vascular - Haemorrhage from graft site
25 - Vascular - Haemorrhage from vascular access or dialysis circuit
26 - Vascular - Haemorrhage from ruptured vascular aneurysm (not Code 22 or 23)
27 - Vascular - Haemorrhage from surgery (not Codes 23, 24 or 26)
28 - Vascular - Other haemorrhage (not Codes 23-27)
30 - Infection - Pulmonary infection (protozoal)
31 - Infection - Pulmonary infection (bacterial)
32 - Infection - Pulmonary infection (viral)
33 - Infection - Pulmonary infection (fungal)
34 - Infection - Infections elsewhere (except viral hepatitis see Code 41 and 42)
35 - Infection - Septicaemia
36 - Infection - Tuberculosis (lung)
37 - Infection - Tuberculosis (elsewhere)
38 - Infection - Generalized viral infection
39 - Infection - Peritonitis (not Code 70)
41 - Liver disease - Liver, due to hepatitis B virus
42 - Liver disease - Liver, other viral hepatitis
43 - Liver disease - Liver, drug toxicity
44 - Liver disease - Cirrhosis, not viral
45 - Liver disease - Cystic liver disease
46 - Liver disease - Liver failure, cause unknown
23 - Gastro-intestinal - Gastro-intestinal haemorrhage
29 - Gastro-intestinal - Mesenteric infarction
62 - Gastro-intestinal - Pancreatitis
70 - Gastro-intestinal - Sclerosing (or adhesive) peritoneal disease
71 - Gastro-intestinal - Perforation of peptic ulcer
72 - Gastro-intestinal - Perforation of colon
51 - Social - Patient refused further treatment
52 - Social - Suicide
53 - Social - Therapy ceased for any other reason
47 - Miscellaneous - Renal failure
48 - Miscellaneous - Recurrent primary disease, benign
49 - Miscellaneous - Recurrent primary disease, malignant
61 - Miscellaneous - Uraemia caused by graft failure
63 - Miscellaneous - Bone marrow depression
64 - Miscellaneous - Cachexia
66 - Miscellaneous - Lymphoid malignant disease possibly induced by immunosuppressive therapy
67 - Miscellaneous - Lymphoid malignant disease not induced by immunosuppressive therapy
69 - Miscellaneous - Dementia
73 - Miscellaneous - Non-lymphoid malignant disease possibly induced by immunosuppressive therapy
74 - Miscellaneous - Non-lymphoid malignant disease not induced by immunosuppressive therapy
79 - Miscellaneous - Multi-system failure
81 - Accident - Accident related to treatment
82 - Accident - Accident unrelated to treatment
90 - Donor organ failure
98 - Other identified cause of death
99 - Unknown

878
Follow-up details - Has the recipient died? - If "recipient died" code is OTHER (98), further details Text

879
Follow-up details - Has the recipient died? - If YES, please give c) Was the patient relisted prior to death? Categories:
1 - No
2 - Yes

880
Clinical status - Current lifestyle activity score Categories:
1 - Able to carry out normal activity without restriction
2 - Only restricted in physically strenuous activity
3 - Can move freely. Capable of self care. Unable to do any form of work
4 - Only capable of limited self care. Confined mostly to bed or chair
5 - Completely reliant on nursing/medical care

881
Clinical status - Total number of days as an inpatient during the last year (excluding transplant admission) Format: string up to 3 characters

882
Clinical status - Number of readmissions over the last year (no readmissions = 0) Format: string up to 2 characters

883
Clinical status - If READMITTED, give one primary reason for each readmission - Protocol - Number of readmissions Format: string up to 2 characters

884
Clinical status - If READMITTED, give one primary reason for each readmission - Acute rejection - Number of readmissions Format: string up to 2 characters

885
Clinical status - If READMITTED, give one primary reason for each readmission - Chronic rejection - Number of readmissions Format: string up to 2 characters

886
Clinical status - If READMITTED, give one primary reason for each readmission - Biliary complications - Number of readmissions Format: string up to 2 characters

887
Clinical status - If READMITTED, give one primary reason for each readmission - Vascular complications - Number of readmissions Format: string up to 2 characters

888
Clinical status - If READMITTED, give one primary reason for each readmission - Disease recurrence - Number of readmissions Format: string up to 2 characters

889
Clinical status - If READMITTED, give one primary reason for each readmission - Infection - Number of readmissions Format: string up to 2 characters

890
Clinical status - If READMITTED, give one primary reason for each readmission - Other - Number of readmissions Format: string up to 2 characters

891
Pregnancy details - Recipient pregnant in the past 12 months? Categories:
1 - No
2 - Yes

892
Liver function - Bilirubin (units: umol/l, micro-mole per litre) Format: string up to 4 characters

893
Liver function - Alk. phosphatase (units: iu/l) Format: string up to 4 characters

894
Liver function - ALT/SGOT (units: iu/l) Format: string up to 4 characters

895
Liver function - AST/SGPT (units: iu/l) Format: string up to 4 characters

896
Renal function - Blood urea (units: mmol/l) Format: NNN.N (precision up to one decimal point)

897
Renal function - Serum creatinine (units: umol/l, micro-mole per litre) Format: string up to 4 characters

898
Renal function - Is transplant related renal dysfunction present? Categories:
1 - No
2 - Yes

899
Current immunosuppression (functioning grafts only) - Cyclosporin A - Given Categories:
1 - No
2 - Yes

900
Current immunosuppression (functioning grafts only) - Cyclosporin A - Dose (units: mg) Format: string up to 3 characters

901
Current immunosuppression (functioning grafts only) - Prednisolone - Given Categories:
1 - No
2 - Yes

902
Current immunosuppression (functioning grafts only) - Prednisolone - Dose (units: mg) Format: NNN.N (precision up to one decimal point)

903
Current immunosuppression (functioning grafts only) - Azathioprine - Given Categories:
1 - No
2 - Yes

904
Current immunosuppression (functioning grafts only) - Azathioprine - Dose (units: mg) Format: string up to 3 characters

905
Current immunosuppression (functioning grafts only) - FK506 - Given Categories:
1 - No
2 - Yes

906
Current immunosuppression (functioning grafts only) - FK506 - Dose (units: mg) Format: NNN.N (precision up to one decimal point)

907
Current immunosuppression (functioning grafts only) - Mycophenolate mofetil - Given Categories:
1 - No
2 - Yes

908
Current immunosuppression (functioning grafts only) - Mycophenolate mofetil - Dose (units: g) Format: N.NNN (precision up to three decimal points)

909
Current immunosuppression (functioning grafts only) - Other - Given Categories:
1 - No
2 - Yes

910
Current immunosuppression (functioning grafts only) - Other - If Yes, please specify Text

911
Has a transplant related tumour been detected? (complete for all grafts) Categories:
1 - No
2 - Yes

C. Kidney Transplant (221 variables)

1. Kidney recipient details (94 variables)

Select ID Name Description

912
Recipient ODT number Format: string up to 6 characters

913
Transplant centre Text

914
Centre code Format: string up to 5 characters

915
Hospital number Text

916
Recipient age Format: number

917
Recipient sex Categories:
1 - Male
2 - Female

918
Recipient height (units: cm) Format: number

919
Recipient weight (units: kg) Format: number

920
Recipient ABO blood group (including, where known, sub-types of A) Format: string up to 3 characters

921
Recipient Rh blood group Categories:

922
Recipient ethnic origin Categories:
1 - White
2 - Asian or Asian British
3 - Black or Black British
4 - Chinese/Oriental
6 - Mixed, please specify
7 - Other, please specify
9 - Unknown
If code 6 (Mixed) or 7 (Other), then can be additionally specified in a separate field

923
Recipient ethnic origin - further details Text
N - Neg
P - Pos

924
Recipient CMV status Categories:
1 - Negative
2 - Positive
7 - Not tested
9 - Unknown

925
Recipient HCV status Categories:
1 - Negative
2 - Positive
7 - Not tested
9 - Unknown

926
Recipient HBV status Categories:
1 - Negative
2 - Positive
7 - Not tested
9 - Unknown

927
Recipient HIV status Categories:
1 - Negative
2 - Positive
7 - Not tested
9 - Unknown

928
Recipient dialysis status Categories:
1 - Haemodialysis
2 - Peritoneal dialysis
3 - Not on dialysis

929
If receiving dialysis, starting date Format: DD/MM/YYYY

930
Dialysis centre Text

931
If under 18 years, is the recipient being treated in a Paediatric Unit? Categories:
1 - No
2 - Yes

932
Mean daily insulin requirement (units: units) Format: string up to 3 characters

933
Recipient primary disease Categories:
00 - Chronic renal failure, aetiology uncertain
10 - Glomerulonephritis, histologically NOT examined
11 - Severe nephrotic syndrome with focal sclerosis (paediatric patients only)
12 - IgA nephropathy (proven by immunofluorescence, not code 85)
13 - Dense deposit disease membrano-proliferative GN, type II (proven by immunoflourescence and/or electron microscopy)
14 - Membranous nephropathy
15 - Membrano-proliferative GN, type I (proven by immunoflourescence and/or electron microscopy - not code 84 or 89)
16 - Rapdily progressive GN without systemic disease (crescentic, histologically confirmed, not coded elsewhere)
19 - Glomerulonephritis, histologically examined
20 - Pyelonephritis/Interstitial nephritis - cause not specified
21 - Pyelonephritis/Interstitial nephritis associated with neurogenic bladder
22 - Pyelonephritis/Interstitial nephritis due to congenital obstructive uropathy with or without vesico-ureteric reflux
23 - Pyelonephritis/Interstitial nephritis due to acquired obstructive uropathy
24 - Pyelonephritis/Interstitial nephritis due to vesico-ureteric reflux without obstruction
25 - Pyelonephrits/Interstitial nephritis due to urolithiasis
29 - Pyelonephritis/Interstitial nephritis due to other cause
30 - Tubulo-interstitial nephritis (not pyelonephritis)
31 - Nephropathy due to analgesic drugs
32 - Nephropathy due to cis-platinum
33 - Nephropathy due to cyclosporin A
39 - Nephropathy by other specific drug
40 - Cystic kidney disease - type unspecified
41 - Polycystic kidneys, adult type (dominant)
42 - Polycystic kidneys, infantile (recessive)
43 - Medullary cystic disease, including nephronophthisis
49 - Cystic kidney disease - other specified type
50 - Hereditary/Familial nephropathy - type unspecified
51 - Hereditary nephritis with nerve deafness (Alport`s Syndrome)
52 - Cystinosis
53 - Primary oxalosis
54 - Fabry`s disease
59 - Hereditary nephropathy - other
60 - Congenital renal hypoplasia - type unspecified
61 - Oligomeganephronic hypoplasia
63 - Congenital renal dysplasia with or without urinary tract malformation
66 - Syndrome of agenesis of abdominal muscles (Prune Belly Syndrome)
70 - Renal vascular disease - type unspecified
71 - Renal vascular disease due to malignant hypertension (NO primary renal disease)
72 - Renal vascular disease due to hypertension (NO primary renal disease)
73 - Renal vascular disease due to polyarteritis
74 - Wegener`s granulomatosis
79 - Renal vascular disease - classified
80 - Diabetes - insulin depedent (Type I)
81 - Diabetes - non-insulin dependent (Type II)
82 - Myelomatosis/light chain deposit disease
83 - Amyloid
84 - Lupus erythematosus
85 - Henoch-Schonlein purpura
86 - Goodpasture`s syndrome
87 - Systemic sclerosis (scleroderma)
88 - Haemolytic uraemic syndrome (including Moschowitz syndrome)
89 - Multi-system disease - other
90 - Cortical or tubular necrosis
91 - Tuberculosis
92 - Gout
93 - Nephrocalcinosis and hypercalcaemic nephropathy
94 - Balkan nephropathy
95 - Kidney tumour
96 - Traumatic or surgical loss of kidney
98 - Other identified renal disorders
If code 29, 39, 49, 59, 79, 89 or 98 (other), then can be additionally specified in a separate field

934
Recipient primary disease - further details Text

935
Number of previous grafts (from live and deceased donors) that this recipient has received - Kidney only (99 - unknown) Format: string up to 2 characters

936
Number of previous grafts (from live and deceased donors) that this recipient has received - Pancreas only (99 - unknown) Format: string up to 2 characters

937
Number of previous grafts (from live and deceased donors) that this recipient has received - Simultaneous kidney and pancreas (99 - unknown) Format: string up to 2 characters

938
Number of previous grafts (from live and deceased donors) that this recipient has received - Pancreas islets (99 - unknown) Format: string up to 2 characters

939
HLA Data - Has the recipient`s HLA phenotype been determined? Categories:
1 - No
2 - Yes

940
HLA Data - HLA broad specificity - First - A Text

941
HLA Data - HLA broad specificity - First - B Text

942
HLA Data - HLA broad specificity - First - DR Text

943
HLA Data - HLA broad specificity - First - Cw Text

944
HLA Data - HLA broad specificity - First - DQB1 Text

945
HLA Data - HLA broad specificity - First - DPB Text

946
HLA Data - HLA broad specificity - First - Other Text

947
HLA Data - HLA broad specificity - Second - A Text

948
HLA Data - HLA broad specificity - Second - B Text

949
HLA Data - HLA broad specificity - Second - DR Text

950
HLA Data - HLA broad specificity - Second - Cw Text

951
HLA Data - HLA broad specificity - Second - DQB1 Text

952
HLA Data - HLA broad specificity - Second - DPB Text

953
HLA Data - HLA broad specificity - Second - Other Text

954
HLA Data - HLA split specificity - First - A Text

955
HLA Data - HLA split specificity - First - B Text

956
HLA Data - HLA split specificity - First - DR Text

957
HLA Data - HLA split specificity - First - Cw Text

958
HLA Data - HLA split specificity - First - DQB1 Text

959
HLA Data - HLA split specificity - First - DPB Text

960
HLA Data - HLA split specificity - First - Other Text

961
HLA Data - HLA split specificity - Second - A Text

962
HLA Data - HLA split specificity - Second - B Text

963
HLA Data - HLA split specificity - Second - DR Text

964
HLA Data - HLA split specificity - Second - Cw Text

965
HLA Data - HLA split specificity - Second - DQB1 Text

966
HLA Data - HLA split specificity - Second - DPB Text

967
HLA Data - HLA split specificity - Second - Other Text

968
HLA Data - HLA allele(s) - First - A Text

969
HLA Data - HLA allele(s) - First - B Text

970
HLA Data - HLA allele(s) - First - DR Text

971
HLA Data - HLA allele(s) - First - Cw Text

972
HLA Data - HLA allele(s) - First - DQB1 Text

973
HLA Data - HLA allele(s) - First - DPB Text

974
HLA Data - HLA allele(s) - First - Other Text

975
HLA Data - HLA allele(s) - Second - A Text

976
HLA Data - HLA allele(s) - Second - B Text

977
HLA Data - HLA allele(s) - Second - DR Text

978
HLA Data - HLA allele(s) - Second - Cw Text

979
HLA Data - HLA allele(s) - Second - DQB1 Text

980
HLA Data - HLA allele(s) - Second - DPB Text

981
HLA Data - HLA allele(s) - Second - Other Text

982
HLA Data - DRB3 alleles - First Text

983
HLA Data - DRB3 alleles - Second Text

984
HLA Data - DRB4 alleles - First Text

985
HLA Data - DRB4 alleles - Second Text

986
HLA Data - DRB5 alleles - First Text

987
HLA Data - DRB5 alleles - Second Text

988
Sensitisation status - Have HLA antibody screening tests been done? Categories:
1 - No
2 - Yes
9 - Unknown

989
Sensitisation status - Screening methods - CDC Categories:
1 - No
2 - Yes
9 - Unknown

990
Sensitisation status - Screening methods - FC Categories:
1 - No
2 - Yes
9 - Unknown

991
Sensitisation status - Screening methods - ELISA Categories:
1 - No
2 - Yes
9 - Unknown

992
Sensitisation status - Date of overall evaluation of sensitisation status Format: DD/MM/YYYY

993
Sensitisation status - Clinically relevant reaction frequency vs T cells/PBL Categories:
0 - negative
% reaction frequency - positive

994
Sensitisation status - Clinically relevant reaction frequency vs T cells/PBL - Antibody class Categories:
1 - IgG
2 - IgM
3 - IgG/M
4 - Not defined

995
Sensitisation status - Clinically relevant reaction frequency vs B cells/CLL Categories:
0 - negative
% reaction frequency - positive

996
Sensitisation status - Clinically relevant reaction frequency vs B cells/CLL - Antibody class Categories:
1 - IgG
2 - IgM
3 - IgG/M
4 - Not defined

997
Sensitisation status - Do the HLA specificities in section "Antibody defined unacceptable HLA specificities" account for all the reactions observed in panel tests? (i.e. there is no undefined "tail") Categories:
1 - No
2 - Yes

998
Sensitisation status - Reaction frequency (should exclude antibodies which are clinically irrelevant, e.g. IgM autoreactive antibody) of residual undefined antibody activity - T/PBL Format: %

999
Sensitisation status - Reaction frequency (should exclude antibodies which are clinically irrelevant, e.g. IgM autoreactive antibody) of residual undefined antibody activity - B/CLL cells Format: %

1000
Antibody defined unacceptable HLA specificities Text

1001
Other unacceptable HLA specificities Text

1002
Match grade - A Format: number

1003
Match grade - B Format: number

1004
Match grade - DR Format: number

1005
Match grade - Total Format: number

2. Kidney transplant details (47 variables)

Select ID Name Description

1006
Date of transplant Format: DD/MM/YYYY

1007
Organs transplanted Categories:
11 - Left kidney
12 - Right kidney
13 - Both kidneys

1008
Recipient weight (units: kg) Format: NNN.N (precision up to one decimal point)

1009
Recipient height (units: cm) Format: string up to 3 characters

1010
Operative details - Kidney removed from ice Format: DD/MM/YYYY at HH:MM

1011
Operative details - Kidney perfused with recipient`s blood Format: DD/MM/YYYY at HH:MM

1012
Operative details - Cold ischaemic time (elapsed time from start of perfusion to time kidney perfused with recipient`s blood) Format: HH:MM

1013
Kidney damage - Capsule stripped - Left Categories:
1 - No
2 - Yes
3 - Unknown

1014
Kidney damage - Capsule stripped - Right Categories:
1 - No
2 - Yes
3 - Unknown

1015
Kidney damage - Capsule torn - Left Categories:
1 - No
2 - Yes
3 - Unknown

1016
Kidney damage - Capsule torn - Right Categories:
1 - No
2 - Yes
3 - Unknown

1017
Kidney damage - Small haematomas - Left Categories:
1 - No
2 - Yes
3 - Unknown

1018
Kidney damage - Small haematomas - Right Categories:
1 - No
2 - Yes
3 - Unknown

1019
Kidney damage - Cut polar artery - Left Categories:
1 - No
2 - Yes
3 - Unknown

1020
Kidney damage - Cut polar artery - Right Categories:
1 - No
2 - Yes
3 - Unknown

1021
Kidney damage - Cut to renal vein - Left Categories:
1 - No
2 - Yes
3 - Unknown

1022
Kidney damage - Cut to renal vein - Right Categories:
1 - No
2 - Yes
3 - Unknown

1023
Kidney damage - Cut to renal artery - Left Categories:
1 - No
2 - Yes
3 - Unknown

1024
Kidney damage - Cut to renal artery - Right Categories:
1 - No
2 - Yes
3 - Unknown

1025
Kidney damage - Patch removed - Left Categories:
1 - No
2 - Yes
3 - Unknown

1026
Kidney damage - Patch removed - Right Categories:
1 - No
2 - Yes
3 - Unknown

1027
Kidney damage - Patch excluding an additional artery - Left Categories:
1 - No
2 - Yes
3 - Unknown

1028
Kidney damage - Patch excluding an additional artery - Right Categories:
1 - No
2 - Yes
3 - Unknown

1029
Kidney damage - Ureter cut short - Left Categories:
1 - No
2 - Yes
3 - Unknown

1030
Kidney damage - Ureter cut short - Right Categories:
1 - No
2 - Yes
3 - Unknown

1031
Kidney damage - Other - Left Categories:
1 - No
2 - Yes
3 - Unknown

1032
Kidney damage - Other - Right Categories:
1 - No
2 - Yes
3 - Unknown

1033
Kidney damage - Other, further details - Left Categories:
1 - No
2 - Yes
3 - Unknown

1034
Kidney damage - Other, further details - Right Categories:
1 - No
2 - Yes
3 - Unknown

1035
Kidney damage - Quality of perfusion - Left Categories:
1 - Good
2 - Fair
3 - Poor
4 - Patchy
9 - Unknown

1036
Kidney damage - Quality of perfusion - Right Categories:
1 - Good
2 - Fair
3 - Poor
4 - Patchy
9 - Unknown

1037
Was Erythropoetin administered to the recipient pre-transplant? Categories:
1 - No
2 - Yes
9 - Unknown

1038
Crossmatch test results - Was a pre-transplant crossmatch test performed? Categories:
1 - No
2 - Yes

1039
Crossmatch test results - Were all crossmatch results negative? Categories:
1 - No
2 - Yes

1040
Crossmatch test results - Was this an antibody incompatible transplant? Categories:
1 - No
2 - Yes
9 - Not known

1041
Crossmatch test results - Was this an antibody incompatible transplant? - If YES, the type of antibody incompatible transplant Categories:
1 - HLAi
2 - ABOi
3 - Both

1042
Immunosuppressive protocol - Cyclosporin Categories:
1 - No
2 - Yes
9 - Unknown

1043
Immunosuppressive protocol - Azathioprine Categories:
1 - No
2 - Yes
9 - Unknown

1044
Immunosuppressive protocol - Tacrolimus Categories:
1 - No
2 - Yes
9 - Unknown

1045
Immunosuppressive protocol - Mycophenolate Categories:
1 - No
2 - Yes
9 - Unknown

1046
Immunosuppressive protocol - Prednisolone / Prednisone Categories:
1 - No
2 - Yes
9 - Unknown

1047
Immunosuppressive protocol - ALG / ATG Categories:
1 - No
2 - Yes
9 - Unknown

1048
Immunosuppressive protocol - OKT3 Categories:
1 - No
2 - Yes
9 - Unknown

1049
Immunosuppressive protocol - Other monoclonal antibody Categories:
1 - No
2 - Yes
9 - Unknown

1050
Immunosuppressive protocol - If other monoclonal antibody, further details Text

1051
Pre-transplant dialysis - Recipient on dialysis prior to transplant Categories:
1 - No
2 - Yes

1052
Pre-transplant dialysis - Recipient on dialysis prior to transplant - If yes, type of dialysis Categories:
1 - Haemodialysis
2 - Peritoneal dialysis

3. Kidney 3 month follow-up (41 variables)

Select ID Name Description

1053
Transplant details - Date of transplant Format: DD/MM/YYYY

1054
Transplant details - Organ transplanted Text

1055
Transplant details - Graft number Format: number

1056
Follow-up details - The patient has transferred to another unit for follow-up Categories:
1 - If yes, please supply full details of unit now caring for this patient in the box below. Please include date of last contact with the patient
2 - If you are able to make a final follow-up return please complete and return this form

1057
Follow-up details - The patient has not attended for this follow-up but is expected to attend for future follow-up. Complete Section 7 and return this form Categories:
1 - No
2 - Yes

1058
Follow-up details - The patient is considered lost to follow-up. Further contact with patient is not expected Categories:
1 - Please supply the reason for loss to all further follow-up in the box below
2 - Please include the date of the last contact with the patient
3 - If you are able to make a final follow-up return please complete and return this form

1059
Follow-up details - Further details Text

1060
Follow-up details - Date and last contact with patient (if exact date cannot be established, then a partial date, for example month and year, will be accepted) Format: DD/MM/YYYY

1061
Follow-up details - Number of treated rejection episodes in the first 3 months post transplant Format: number

1062
Follow-up details - Date of first rejection Format: DD/MM/YYYY

1063
Follow-up details - Has this patient developed evidence of a primary or recurrent renal disease (excluding infection, large vessel disease, outflow obstruction and chronic allograft nephropathy) in the graft during the first 3 months post transplant? Categories:
1 - No
2 - Yes
9 - Unknown

1064
Follow-up details - Has the transplant failed? Categories:
1 - No
2 - Yes

1065
Follow-up details - Date of failure Format: DD/MM/YYYY

1066
Follow-up details - Cause of failure Categories:
01 - Hyperacute rejection (leading to failure within 48 hours of transplant)
02 - Rejection while taking immunosuppressive drugs
03 - Rejection after stopping all immunosuppressive drugs
04 - Recurrent primary renal disease
05 - Vascular or ureteric operative problems (not Code 6)
06 - Vascular (arterial or venous) thrombosis not related to operative problems or rejection
07 - Infection of graft
08 - Removal of functioning graft
09 - `Non-viable` kidney
90 - Recipient died, graft was functioning at the time of death
98 - Other
99 - Unknown
If code 98 (other), then can be additionally specified in a separate field

1067
Follow-up details - Cause of failure - Further details Text

1068
Follow-up details - Date regular dialysis commenced post-failure Format: DD/MM/YYYY

1069
Follow-up details - Date of graft nephrectomy (still in situ = 99/99/9999) Format: DD/MM/YYYY

1070
Follow-up details - Has the recipent died? Categories:
1 - No
2 - Yes

1071
Follow-up details - Date of death (unknown = 99/99/9999) Format: DD/MM/YYYY

1072
Follow-up details - Cause of death - Primary cause Categories (Code Kidney-A), see listing below

1073
Follow-up details - Cause of death - Secondary cause Categories (Code Kidney-A), see listing below

1074
Follow-up details - Cause of death - If code 98 (other), further details Text

1075
Clinical assessment of graft function - Date of clinical assessment of functioning graft (For grafts still functioning please report an assessment undertaken not earlier than 10 weeks post-transplant) Format: DD/MM/YYYY

1076
Clinical assessment of graft function - Recipient weight at time of assessment (units: kg) Format: NNN.N (precision up to one decimal point)

1077
Clinical assessment of graft function - Recipient height (if under 18 years of age) (units: cm) Format: string up to 3 characters

1078
Clinical assessment of graft function - Recipient serum creatinine measured between 10 and 14 weeks post-transplant (units: umol/l, micro-mole per litre) Format: string up to 4 characters

1079
Clinical assessment of graft function - Recipient serum creatinine - Measured on Format: DD/MM/YYYY

1080
Clinical assessment of graft function - Onset of graft function Categories:
1 - Immediate
2 - Delayed (at least one dialysis treatment was required during the first post-operative week)
3 - Primary non-function

1081
Clinical assessment of graft function - Onset of graft function - If graft function delayed, has graft now started to function? Categories:
1 - No
2 - Yes

1082
Clinical assessment of graft function - Onset of graft function - If graft function delayed, has graft now started to function? - If yes, date on which post-transplant dialysis ceased Format: DD/MM/YYYY

1083
Current immunosuppressive drugs - Current immunosuppressive drugs as at (prior to graft failure for failed grafts, prior to death for deaths with a functioning graft) Format: DD/MM/YYYY

1084
Current immunosuppressive drugs - Ciclosporin Categories:
1 - No
2 - Yes
9 - Unknown

1085
Current immunosuppressive drugs - Azathioprine Categories:
1 - No
2 - Yes
9 - Unknown

1086
Current immunosuppressive drugs - Tacrolimus Categories:
1 - No
2 - Yes
9 - Unknown

1087
Current immunosuppressive drugs - Mycophenolate Categories:
1 - No
2 - Yes
9 - Unknown

1088
Current immunosuppressive drugs - Prednisolone / Prednisone Categories:
1 - No
2 - Yes
9 - Unknown

1089
Current immunosuppressive drugs - Other Categories:
1 - No
2 - Yes
9 - Unknown

1090
Current immunosuppressive drugs - If other, please specify Text

1091
Malignancy - Has the recipient developed a malignancy in the first 3 months post-transplant (including post-transplant lymphoproliferative disease (PTLD) and lymphoma, but excluding cervical dysplasia)? Categories:
1 - No
2 - Yes

1092
Malignancy - Date first diagnosed Format: DD/MM/YYYY

1093
Malignancy - Details of type of malignancy Text

4. Kidney annual follow-up (39 variables) -- Additionally a listing of Code Kidney-A

Select ID Name Description

1094
Transplant details - Date of transplant Format: DD/MM/YYYY

1095
Transplant details - Organ transplanted Text

1096
Transplant details - Graft number Format: number

1097
Follow-up details - The patient has transferred to another unit for follow-up Categories:
1 - If yes, please supply full details of unit now caring for this patient in the box below. Please include date of last contact with the patient
2 - If you are able to make a final follow-up return please complete and return this form

1098
Follow-up details - The patient has not attended for this follow-up but is expected to attend for future follow-up. Complete Section 8 and return this form Categories:
1 - No
2 - Yes

1099
Follow-up details - The patient is considered lost to follow-up. Further contact with patient is not expected Categories:
1 - Please supply the reason for loss to all further follow-up in the box below
2 - Please include the date of the last contact with the patient
3 - If you are able to make a final follow-up return please complete and return this form

1100
Follow-up details - Further details Text

1101
Follow-up details - Date and last contact with patient (if exact date cannot be established, then a partial date, for example month and year, will be accepted) Format: DD/MM/YYYY

1102
Follow-up details - Number of treated rejection episodes in the last 12 months Format: number

1103
Follow-up details - Date of first rejection Format: DD/MM/YYYY

1104
Follow-up details - Has this patient developed evidence of a primary or recurrent renal disease (excluding infection, large vessel disease, outflow obstruction and chronic allograft nephropathy) in the graft during the past 12 months? Categories:
1 - No
2 - Yes
9 - Unknown

1105
Follow-up details - Has the transplant failed? Categories:
1 - No
2 - Yes

1106
Follow-up details - Date of failure(unknown = 99/99/9999) Format: DD/MM/YYYY

1107
Follow-up details - Cause of failure Categories:
01 - Hyperacute rejection (leading to failure within 48 hours of transplant)
02 - Rejection while taking immunosuppressive drugs
03 - Rejection after stopping all immunosuppressive drugs
04 - Recurrent primary renal disease
05 - Vascular or ureteric operative problems (not Code 6)
06 - Vascular (arterial or venous) thrombosis not related to operative problems or rejection
07 - Infection of graft
08 - Removal of functioning graft
09 - `Non-viable` kidney
90 - Recipient died, graft was functioning at the time of death
98 - Other
99 - Unknown
If code 98 (other), then can be additionally specified in a separate field

1108
Follow-up details - Cause of failure - Further details Text

1109
Follow-up details - Date regular dialysis commenced post-failure Format: DD/MM/YYYY

1110
Follow-up details - Date of graft nephrectomy (still in situ = 99/99/9999) Format: DD/MM/YYYY

1111
Follow-up details - Has the recipent died? Categories:
1 - No
2 - Yes

1112
Follow-up details - Date of death (unknown = 99/99/9999) Format: DD/MM/YYYY

1113
Follow-up details - Cause of death - Primary cause Categories (Code Kidney-A), see listing below

1114
Follow-up details - Cause of death - Secondary cause Categories (Code Kidney-A), see listing below

1115
Follow-up details - Cause of death - If code 98 (other), further details Text

1116
Clinical assessment of graft function - Date of clinical assessment of functioning graft (For first annual assessment of functioning graft please report an assessment undertaken not earlier than 10 months post-transplant) Format: DD/MM/YYYY

1117
Clinical assessment of graft function - Recipient weight at time of assessment (units: kg) Format: NNN.N (precision up to one decimal point)

1118
Clinical assessment of graft function - Recipient height (if under 18 years of age) (units: cm) Format: string up to 3 characters

1119
Clinical assessment of graft function - Recipient serum creatinine measured nearest graft anniversary (For the first annual assessment please report level measured between 11 and 13 months post-transplant) (units: umol/l, micro-mole per litre) Format: string up to 4 characters

1120
Clinical assessment of graft function - Recipient serum creatinine - Measured on Format: DD/MM/YYYY

1121
Current immunosuppressive drugs - Current immunosuppressive drugs as at (prior to graft failure for failed grafts, prior to death for deaths with a functioning graft) Format: DD/MM/YYYY

1122
Current immunosuppressive drugs - Ciclosporin Categories:
1 - No
2 - Yes
9 - Unknown

1123
Current immunosuppressive drugs - Azathioprine Categories:
1 - No
2 - Yes
9 - Unknown

1124
Current immunosuppressive drugs - Tacrolimus Categories:
1 - No
2 - Yes
9 - Unknown

1125
Current immunosuppressive drugs - Mycophenolate Categories:
1 - No
2 - Yes
9 - Unknown

1126
Current immunosuppressive drugs - Prednisolone / Prednisone Categories:
1 - No
2 - Yes
9 - Unknown

1127
Current immunosuppressive drugs - Other Categories:
1 - No
2 - Yes
9 - Unknown

1128
Current immunosuppressive drugs - If other, please specify Text

1129
Malignancy - Has the recipient developed a malignancy in the past 12 months (including post-transplant lymphoproliferative disease (PTLD) and lymphoma, but excluding cervical dysplasia)? Categories:
1 - No
2 - Yes

1130
Malignancy - Date first diagnosed Format: DD/MM/YYYY

1131
Malignancy - Details of type of malignancy Text

1132
Pregnancy - Recipient pregnant in the past 12 months? Categories:
1 - No
2 - Yes

1133
Code Kidney-A (relevant to "Recipient liver diseases") Categories (Code Kidney-A):
11 - Cardiothoracic - Myocardial ischaemia and infarction
12 - Cardiothoracic - Hyperkalaemia
13 - Cardiothoracic - Haemorrhagic pericarditis
15 - Cardiothoracic - Sudden unexplained cardiac death
16 - Cardiothoracic - Hypertensive cardiac failure
17 - Cardiothoracic - Hypokalaemia
18 - Cardiothoracic - Fluid overload
19 - Cardiothoracic - Elevated PVR/Pulmonary hypertension
20 - Cardiothoracic - Airway dehiscence
75 - Cardiothoracic - Early graft dysfunction
76 - Cardiothoracic - Cardiac tamponade
77 - Cardiothoracic - ARDS
78 - Cardiothoracic - Respiratory failure
21 - Vascular - Pulmonary embolus
22 - Vascular - Cerebro-vascular accident
24 - Vascular - Haemorrhage from graft site
25 - Vascular - Haemorrhage from vascular access or dialysis circuit
26 - Vascular - Haemorrhage from ruptured vascular aneurysm (not Code 22 or 23)
27 - Vascular - Haemorrhage from surgery (not Codes 23, 24 or 26)
28 - Vascular - Other haemorrhage (not Codes 23-27)
30 - Infection - Pulmonary infection (protozoal)
31 - Infection - Pulmonary infection (bacterial)
32 - Infection - Pulmonary infection (viral)
33 - Infection - Pulmonary infection (fungal)
34 - Infection - Infections elsewhere (except viral hepatitis see Code 41-42)
35 - Infection - Septicaemia
36 - Infection - Tuberculosis (lung)
37 - Infection - Tuberculosis (elsewhere)
38 - Infection - Generalized viral infection
39 - Infection - Peritonitis (not Code 70)
41 - Liver disease - Hepatitis B virus
42 - Liver disease - Other viral hepatitis
43 - Liver disease - Drug toxicity
44 - Liver disease - Cirrhosis (not viral)
45 - Liver disease - Cystic liver disease
46 - Liver disease - Liver failure (cause unknown)
23 - Gastro-intestinal - Gastro-intestinal haemorrhage
29 - Gastro-intestinal - Mesenteric infarction
62 - Gastro-intestinal - Pancreatitis
70 - Gastro-intestinal - Sclerosing (or adhesive) peritoneal disease
71 - Gastro-intestinal - Perforation of peptic ulcer
72 - Gastro-intestinal - Perforation of colon
51 - Social - Patient refused further treatment
52 - Social - Suicide
53 - Social - Therapy ceased for any other reason
47 - Miscellaneous - Renal failure
48 - Miscellaneous - Recurrent primary disease - benign
49 - Miscellaneous - Recurrent primary disease - malignant
61 - Miscellaneous - Uraemia caused by graft failure
63 - Miscellaneous - Bone marrow depression
64 - Miscellaneous - Cachexia
66 - Miscellaneous - Lymphoid malignant disease possibly induced by immunosuppressive therapy
67 - Miscellaneous - Lymphoid malignant disease not induced by immunosuppressive therapy
69 - Miscellaneous - Dementia
73 - Miscellaneous - Non-lymphoid malignant disease possibly induced by immunosuppressive therapy
74 - Miscellaneous - Non-lymphoid malignant disease not induced by immunosuppressive therapy
79 - Miscellaneous - Multi-system failure
81 - Accident - Accident related to treatment
82 - Accident - Accident unrelated to treatment
90 - Accident - Donor organ failure
98 - Accident - Other identified cause of death
99 - Accident - Unknown

D. Pancreas Transplant (447 variables)

1. Pancreas recipient details (48 variables)

Select ID Name Description

1134
Recipient ODT number Format: string up to 6 characters

1135
Transplant centre Text

1136
Centre code Format: string up to 5 characters

1137
Hospital number Text

1138
Recipient age Format: number

1139
Recipient sex Categories:
1 - Male
2 - Female

1140
Recipient height (units: cm) Format: number

1141
Recipient weight (units: kg) Format: number

1142
Recipient ABO blood group (including, where known, sub-types of A) Format: string up to 3 characters

1143
Recipient Rh blood group Categories:
N - Neg
P - Pos

1144
Recipient ethnic origin Categories:
1 - White
2 - Asian or Asian British
3 - Black or Black British
4 - Chinese/Oriental
6 - Mixed, please specify
7 - Other, please specify
9 - Unknown
If code 6 (Mixed) or 7 (Other), then can be additionally specified in a separate field

1145
Recipient ethnic origin - further details Text

1146
Diabetic complications - Myocardial infarction Categories:
1 - No
2 - Yes

1147
Diabetic complications - CVA Categories:
1 - No
2 - Yes

1148
Diabetic complications - Registered blind Categories:
1 - No
2 - Yes

1149
Diabetic complications - Limb amputation Categories:
1 - No amputation
2 - Major limb amputation
3 - Digital amputation

1150
Pre-transplant laboratory values - IFCC-HbA1c (units: mmol/mol) Format: string up to 3 characters

1151
Pre-transplant laboratory values - IFCC-HbA1c - Measured on Format: DD/MM/YYYY

1152
Cause of diabetes Categories:
1 - Type 1
2 - Type 2
3 - Other (e.g. pancreatectomy)
If code 3 (Other), then can be additionally specified in a separate field

1153
Cause of diabetes - If other, please specify Text

1154
Diabetes - Year of diagnosis (if unknown, enter 9999) Format: string up to 4 characters

1155
Insulin dose prior to transplant (units: units/24hr) Format: string up to 3 characters

1156
Recipient on dialysis immediately prior to transplant Categories:
1 - Haemodialysis
2 - Peritoneal dialysis
3 - Not on dialysis

1157
If on dialysis, initial start date (if previously transplanted, date of return to dialysis) Format: DD/MM/YYYY

1158
If not on dialysis, serum creatinine (most recent prior to transplant) (units: umol/l, micro-mole per litre) Format: string up to 4 characters

1159
Serum creatinine - Measured on Format: DD/MM/YYYY

1160
Recipient employment status (Replace `work` with `study` for patients in full time education) Categories:
11 - Working - full time
12 - Able to work - chooses not to
13 - Able to work - unable to find work
14 - Working part time - by choice
15 - Working part time - due to disease
16 - Unable to work - due to disease
17 - Hospitalised
18 - Other
19 - Unknown
If code 18 (Other), then can be additionally specified in a separate field

1161
Recipient employment status - If other, please specify Text

1162
Recipient smoking details - Pipe / cigars Categories:
1 - No
2 - Yes

1163
Recipient smoking details - Cigarettes Categories:
1 - No
2 - Yes
3 - Ex-smoker

1164
Recipient smoking details - Cigarettes (number / day) Format: string up to 2 characters

1165
Recipient smoking details - If ex-smoker, years since stop (to nearest year, 6 months = 1 year) Format: string up to 2 characters

1166
Recipient smoking details - Total exposure in pack years Format: string up to 2 characters

1167
Pre-transplant virology - Hepatitis B - Surface Ag (HBsAg) Categories:
1 - Negative
2 - Positive
7 - Not tested
9 - Unknown

1168
Pre-transplant virology - Hepatitis B - Surface Ag (HBsAg) - If negative - HBsAb Categories:
1 - Negative
2 - Positive
7 - Not tested
9 - Unknown

1169
Pre-transplant virology - Hepatitis B - Surface Ag (HBsAg) - If positive - e-antigen Categories:
1 - Negative
2 - Positive
7 - Not tested
9 - Unknown

1170
Pre-transplant virology - Hepatitis B - Surface Ag (HBsAg) - If positive - e-antibody Categories:
1 - Negative
2 - Positive
7 - Not tested
9 - Unknown

1171
Pre-transplant virology - Hepatitis B - Surface Ag (HBsAg) - If positive - e-antigen Categories:
1 - Negative
2 - Positive
7 - Not tested
9 - Unknown

1172
Pre-transplant virology - CMV Categories:
1 - Negative
2 - Positive
7 - Not tested
9 - Unknown

1173
Pre-transplant virology - HIV Categories:
1 - Negative
2 - Positive
7 - Not tested
9 - Unknown

1174
Pre-transplant virology - Hepatitis C - Antibody test Categories:
1 - Negative
2 - Positive
7 - Not tested
9 - Unknown

1175
Pre-transplant virology - Hepatitis C - Antibody test - If positive - HCV RNA (PCR) Categories:
1 - Negative
2 - Positive
7 - Not tested
9 - Unknown

1176
Pre-transplant virology - Epstein-Barr Virus (EBV) Categories:
1 - Negative
2 - Positive
7 - Not tested
9 - Unknown

1177
Pre-transplant virology - Epstein-Barr Virus (EBV) - If positive - Epstein-Barr Nuclear Antigen (EBNA) Categories:
1 - Negative
2 - Positive
7 - Not tested
9 - Unknown

1178
Pre-transplant virology - Epstein-Barr Virus (EBV) - If positive - Viral Capsid Antigen (VCA) Categories:
1 - Negative
2 - Positive
7 - Not tested
9 - Unknown

1179
Pre-transplant virology - Epstein-Barr Virus (EBV) - If positive - Early Antigen (EA) Categories:
1 - Negative
2 - Positive
7 - Not tested
9 - Unknown

1180
Pre-transplant virology - Epstein-Barr Virus (EBV) - If positive - Other Categories:
1 - Negative
2 - Positive
7 - Not tested
9 - Unknown

1181
Pre-transplant virology - Epstein-Barr Virus (EBV) - If positive - If OTHER, please specify Text

2. Pancreas transplant details (59 variables) -- Additionally a listing of Code Pancreas-A

Select ID Name Description

1182
Date of transplant (Date surgery commenced) Format: DD/MM/YYYY

1183
Number of previous pancreas transplants (Enter `0` for none) Format: number

1184
Organs transplanted Categories:
1 - Pancreas only
2 - Pancreas after kidney
3 - Simultaneous pancreas and kidney (SPK)
4 - Liver and pancreas
5 - Other
If code 5 (Other), then can be additionally specified in a separate field

1185
Organs transplanted - If other, please specify Text

1186
Perfusion and operative details - Machine preservation used Categories:
1 - No
2 - Yes - warm
3 - Yes - cold

1187
Perfusion and operative details - Date/time pancreas removed from ice or machine preservation immediately prior to transplant Format: DD/MM/YYYY at HH:MM

1188
Perfusion and operative details - Date/time pancreas perfused with recipient`s blood Format: DD/MM/YYYY at HH:MM

1189
Perfusion and operative details - Cold ischaemic time (elapsed time from start of perfusion to time pancreas perfused with recipient`s blood) Format: HH:MM

1190
Perfusion and operative details - If donor after circulatory death, duration of asystolic period (if uncontrolled, please provide an estimated time) (units: min) Format: string up to 2 characters

1191
Perfusion and operative details - Arterial vascular management/reconstruction - Pancreas en bloc with liver Categories:
1 - No
2 - Yes

1192
Perfusion and operative details - Arterial vascular management/reconstruction - Pancreas en bloc with intestine Categories:
1 - No
2 - Yes

1193
Perfusion and operative details - Arterial vascular management/reconstruction - Y-graft to splenic artery (SPA) and superior mesenteric artery (SMA) Categories:
1 - No
2 - Yes

1194
Perfusion and operative details - Arterial vascular management/reconstruction - SPA to SMA - direct Categories:
1 - No
2 - Yes

1195
Perfusion and operative details - Arterial vascular management/reconstruction - SPA to SMA - interposition Categories:
1 - No
2 - Yes

1196
Perfusion and operative details - Arterial vascular management/reconstruction - Other vascular technique Categories:
1 - No
2 - Yes

1197
Perfusion and operative details - Arterial vascular management/reconstruction - Venous extension graft Categories:
1 - No
2 - Yes

1198
Perfusion and operative details - Arterial vascular management/reconstruction - Coeliac axis with pancreas Categories:
1 - No
2 - Yes

1199
Perfusion and operative details - Arterial vascular management/reconstruction - If OTHER, please specify Text

1200
Perfusion and operative details - Surgical data - Graft placement Categories:
1 - Intraperitoneal
2 - Extraperitoneal
3 - Transperitoneal

1201
Perfusion and operative details - Surgical data - Operative technique Categories:
1 - Segmental
2 - Whole organ with duodenum
3 - Whole organ with duodenal patch
4 - Other

1202
Perfusion and operative details - Surgical data - A-V fistula Categories:
1 - No
2 - Yes

1203
Perfusion and operative details - Surgical data - Venous vascular management Categories:
1 - Portal system (portal or tributaries)
2 - Systemic system (IVC)

1204
Perfusion and operative details - Surgical data - Duct management Categories:
1 - Enteric side to side
2 - Enteric - roux
3 - Bladder drainage

1205
Pancreas damage - Quality of cold perfusion Categories:
1 - Good
2 - Fair
3 - Poor
4 - Patchy
9 - Unknown

1206
Pancreas damage - Haematomas Categories:
1 - No
2 - Yes
9 - Unknown

1207
Pancreas damage - If HAEMATOMAS, please specify Text

1208
Pancreas damage - Damage to arterial supply Categories:
1 - No
2 - Yes
9 - Unknown

1209
Pancreas damage - Pancreatic oedema Categories:
1 - No
2 - Yes
9 - Unknown

1210
Pancreas damage - Portal vein short Categories:
1 - Cut short (<1 cm)
2 - Good length (>=1 cm)
3 - Absent
9 - Unknown

1211
Pancreas damage - Pancreatic inflammation Categories:
1 - No
2 - Yes
9 - Unknown

1212
Pancreas damage - Pancreas fatty Categories:
1 - No
2 - Yes
9 - Unknown

1213
Pancreas damage - Hepatic artery from SMA Categories:
1 - No
2 - Yes
9 - Unknown

1214
Pancreas damage - Pancreatic capsule damage Categories:
1 - No
2 - Yes
9 - Unknown

1215
Pancreas damage - Duodenum reperfused Categories:
1 - No
2 - Yes
9 - Unknown

1216
Pancreas damage - Parenchymal damage Categories:
1 - No
2 - Yes
9 - Unknown

1217
Pancreas damage - If PARENCHYMAL DAMAGE, please specify Text

1218
Pancreas damage - Other Categories:
1 - No
2 - Yes
9 - Unknown

1219
Pancreas damage - If OTHER, please specify Text

1220
Crossmatch results - Was a pre-transplant crossmatch test performed? Categories:
1 - No
2 - Yes

1221
Crossmatch results - Were all crossmatch test results negative? Categories:
1 - No
2 - Yes

1222
Post-operative details - Intended primary immunosuppressive regime - Ciclosporin Categories:
1 - No
2 - Yes
9 - Unknown

1223
Post-operative details - Intended primary immunosuppressive regime - Tacrolimus Categories:
1 - No
2 - Yes
9 - Unknown

1224
Post-operative details - Intended primary immunosuppressive regime - Azathioprine Categories:
1 - No
2 - Yes
9 - Unknown

1225
Post-operative details - Intended primary immunosuppressive regime - Mycophenolate Categories:
1 - No
2 - Yes
9 - Unknown

1226
Post-operative details - Intended primary immunosuppressive regime - Sirolimus / Everolimus Categories:
1 - No
2 - Yes
9 - Unknown

1227
Post-operative details - Intended primary immunosuppressive regime - Prednisolone / Prednisone Categories:
1 - No
2 - Yes
9 - Unknown

1228
Post-operative details - Intended primary immunosuppressive regime - Other immunosuppressive agent Categories:
1 - No
2 - Yes
9 - Unknown

1229
Post-operative details - If OTHER immunosuppressive agent, please specify Text

1230
Post-operative details - Intended "induction" agents - ALG / ATG Categories:
1 - No
2 - Yes
9 - Unknown

1231
Post-operative details - Intended "induction" agents - OKT3 Categories:
1 - No
2 - Yes
9 - Unknown

1232
Post-operative details - Intended "induction" agents - Anti-CD25 monoclonal antibody Categories:
1 - No
2 - Yes
9 - Unknown

1233
Post-operative details - Intended "induction" agents - Campath 1H Categories:
1 - No
2 - Yes
9 - Unknown

1234
Post-operative details - Intended "induction" agents - Other antibody or induction agent Categories:
1 - No
2 - Yes
9 - Unknown

1235
Post-operative details - Intended "induction" agents - If OTHER antibody or induction agent, please specify Text

1236
Post-operative details - Did the recipient die within 24 hours of transplant? Categories:
1 - No
2 - Yes

1237
Post-operative details - Did the recipient die within 24 hours of transplant? - If YES, a) Date of death Format: DD/MM/YYYY

1238
Post-operative details - Did the recipient die within 24 hours of transplant? - If YES, b) Cause of death - Primary Categories (Code Pancreas-A), see listing below

1239
Post-operative details - Did the recipient die within 24 hours of transplant? - If YES, b) Cause of death - Secondary Categories (Code Pancreas-A), see listing below

1240
Post-operative details - Did the recipient die within 24 hours of transplant? - If YES - If OTHER CAUSE OF DEATH (98), please specify Text

1241
Code Pancreas-A (relevant to "Cause of death") Categories (Code Pancreas-A):
11 - Cardiothoracic - Myocardial ischaemia and infarction
12 - Cardiothoracic - Hyperkalaemia
13 - Cardiothoracic - Haemorrhagic pericarditis
14 - Cardiothoracic - Other causes of cardiac failure
15 - Cardiothoracic - Sudden unexplained cardiac death
16 - Cardiothoracic - Hypertensive cardiac failure
17 - Cardiothoracic - Hypokalaemia
18 - Cardiothoracic - Fluid overload
19 - Cardiothoracic - Elevated PVR / Pulmonary hypertension
20 - Cardiothoracic - Airway dehiscence
75 - Cardiothoracic - Early graft dysfunction
76 - Cardiothoracic - Cardiac tamponade
77 - Cardiothoracic - Acute respiratory distress syndrome (ARDS)
78 - Cardiothoracic - Respiratory failure
21 - Vascular - Pulmonary embolus
22 - Vascular - Cerebrovascular accident
24 - Vascular - Haemorrhage from graft site
25 - Vascular - Haemorrhage from vascular access or dialysis circuit
26 - Vascular - Haemorrhage from ruptured vascular aneurysm (not Code 22 or 23)
27 - Vascular - Haemorrhage from surgery (not Code 23, 24 or 26)
28 - Vascular - Other haemorrhage (not Codes 23-27)
30 - Infection - Pulmonary infection (protozoal)
31 - Infection - Pulmonary infection (bacterial)
32 - Infection - Pulmonary infection (viral)
33 - Infection - Pulmonary infection (fungal)
34 - Infection - Infections elsewhere (except viral hepatitis, see Codes 41-42)
35 - Infection - Septicaemia
36 - Infection - Tuberculosis (lung)
37 - Infection - Tuberculosis (elsewhere)
38 - Infection - Generalized viral infection
39 - Infection - Peritonitis (not Code 70)
41 - Liver disease - Hepatitis B virus
42 - Liver disease - Other viral hepatitis
43 - Liver disease - Drug toxicity
44 - Liver disease - Cirrhosis (not viral)
45 - Liver disease - Cystic liver disease
46 - Liver disease - Liver failure (cause unknown)
47 - Renal - Renal failure
23 - Gastrointestinal - Gastrointestinal haemorrhage
29 - Gastrointestinal - Mesenteric infarction
62 - Gastrointestinal - Pancreatitis
70 - Gastrointestinal - Sclerosing (or adhesive) peritoneal disease
71 - Gastrointestinal - Perforation of peptic ulcer
72 - Gastrointestinal - Perforation of colon
51 - Social - Patient refused further treatment
52 - Social - Suicide
53 - Social - Therapy ceased for any other reason
48 - Miscellaneous - Recurrent primary disease - benign
49 - Miscellaneous - Recurrent primary disease - malignant
61 - Miscellaneous - Uraemia caused by graft failure
63 - Miscellaneous - Bone marrow depression
64 - Miscellaneous - Cachexia
66 - Miscellaneous - Lymphoid malignant disease possibly induced by immunosuppressive therapy
67 - Miscellaneous - Lymphoid malignant disease not induced by immunosuppressive therapy
69 - Miscellaneous - Dementia
73 - Miscellaneous - Non-lymphoid malignant disease possibly induced by immunosuppressive therapy
74 - Miscellaneous - Non-lymphoid malignant disease not induced by immunosuppressive therapy
79 - Miscellaneous - Multi-system failure
81 - Accident - Accident related to treatment
82 - Accident - Accident unrelated to treatment
90 - Accident - Donor organ failure
98 - Accident - Other identified cause of death
99 - Accident - Unknown

3. Supplementary pancreas / islet registration data (21 variables)

Select ID Name Description

1242
History of dialysis - Is recipient receiving dialysis? Categories:
1 - Haemodialysis
2 - Peritoneal dialysis
3 - Not on dialysis

1243
History of dialysis - If receiving dialysis, starting date (if previously transplanted, date of return to dialysis) Format: DD/MM/YYYY

1244
History of dialysis - If NOT ON DIALYSIS, state most recent serum creatinine (units: umol/l, micro-mole per litre) Format: string up to 4 characters

1245
History of dialysis - Date creatinine measured Format: DD/MM/YYYY

1246
History of dialysis - Estimated GFR at time of registration (units: ml/min) Format: NNN.N (precision up to one decimal point)

1247
History of diabetes - Cause of diabetes Categories:
1 - Type 1
2 - Type 2
3 - Other (e.g. pancreatectomy)
If code 3 (Other), then can be additionally specified in a separate field

1248
History of diabetes - Other Text

1249
History of diabetes - Year of diagnosis Format: YYYY

1250
History of diabetes - Is the recipient insulin treated? Categories:
1 - No
2 - Yes

1251
History of diabetes - Is the recipient insulin treated? - If yes, insulin dose (units: units / 24 hrs) Format: string up to 3 characters

1252
History of diabetes - Is the recipient insulin treated? - Recorded on Format: DD/MM/YYYY

1253
History of diabetes - If listed for islet transplant has C-peptide below the assay limit of detection in the presence of glucose >4mmol/l been confirmed? Categories:
1 - No
2 - Yes

1254
History of diabetes - If listed for islet transplant has C-peptide below the assay limit of detection in the presence of glucose >4mmol/l been confirmed? - Date of assay Format: DD/MM/YYYY

1255
Past medical history of diabetic complications - Number of severe hypoglycaemic episodes (ADA definition) in the last 24 months Format: number

1256
Past medical history of diabetic complications - If the patient has had at least one hypoglycaemic episode in the last 12 months, please specify the number that required: Third party assistance only Format: number

1257
Past medical history of diabetic complications - If the patient has had at least one hypoglycaemic episode in the last 12 months, please specify the number that required: Paramedic attendance Format: number

1258
Past medical history of diabetic complications - If the patient has had at least one hypoglycaemic episode in the last 12 months, please specify the number that required: Hospital attendance/admission Format: number

1259
Past medical history of diabetic complications - This patient has been assessed by a diabetologist to have disabling hypoglycaemia Categories:
1 - No
2 - Yes

1260
Past medical history of diabetic complications - IFCC-HbA1c (units: mmol/mol) Format: string up to 3 characters

1261
Past medical history of diabetic complications - Height (units: cm) Format: string up to 3 characters

1262
Past medical history of diabetic complications - Weight (units: kg) Format: NNN.N (precision up to one decimal point)

4. Deceased donor pancreas information (127 variables) -- Additionally a listing of Code Pancreas-B

Select ID Name Description

1263
Donor information - ODT donor number Format: number

1264
Donor information - Blood group - ABO (including, where known, subtypes of A) Format: string up to 3 characters

1265
Donor information - Blood group - Rh Categories:
N - Negative
P - Positive

1266
Donor information - BMI Format: string up to 2 characters

1267
Donor information - Abdominal girth (units: cm) Format: string up to 3 characters

1268
Donor information - Donor type Categories:
1 - Donor after brain death
2 - Donor after circulatory death

1269
Donor information - Donor hospital Text

1270
Donor information - Retrieval team Text

1271
Donor information - Date/time donor surgery commenced Format: DD/MM/YYYY at HH:MM

1272
Donation details - If donor after brain death - Date/time ventilation ceased Format: DD/MM/YYYY at HH:MM

1273
Donation details - If donor after brain death - Date/time of circulatory arrest Format: DD/MM/YYYY at HH:MM

1274
Donation details - If donor after circulatory death (DCD) - Donor code Categories:
Controlled: cardiac arrest is expected/anticipated
11 - After withdrawal of treatment in a patient not certified dead by brain stem tests
12 - After withdrawal of treatment in a deceased person previously certified dead by brain stem tests
Uncontrolled: cardiac arrest is unexpected/unanticipated
13 - Patient dead on arrival at hospital
14 - Unsuccessful resuscitation in Accident and Emergency
15 - Unexpected cardiac arrest in a patient being treated in ICU

1275
Donation details - If donor after circulatory death (DCD) - If controlled DCD - Date/time treatment withdrawn Format: DD/MM/YYYY at HH:MM

1276
Donation details - If donor after circulatory death (DCD) - If controlled DCD - Date/time systolic BP <50 Format: DD/MM/YYYY at HH:MM

1277
Donation details - If donor after circulatory death (DCD) - If controlled DCD - Date/time of cardiac arrest Format: DD/MM/YYYY at HH:MM

1278
Donation details - If donor after circulatory death (DCD) - If controlled DCD - Date/time certification of death Format: DD/MM/YYYY at HH:MM

1279
Donation details - If donor after circulatory death (DCD) - If uncontrolled DCD - Date/time of cardiac arrest Format: DD/MM/YYYY at HH:MM

1280
Donation details - If donor after circulatory death (DCD) - If uncontrolled DCD - Date/time resuscitation commenced Format: DD/MM/YYYY at HH:MM

1281
Donation details - If donor after circulatory death (DCD) - If uncontrolled DCD - Date/time resuscitation ceased Format: DD/MM/YYYY at HH:MM

1282
Donation details - If donor after circulatory death (DCD) - If uncontrolled DCD - Date/time certification of death Format: DD/MM/YYYY at HH:MM

1283
Donation details - For ALL donors - Date/time cold perfusion commenced Format: DD/MM/YYYY at HH:MM

1284
Donation details - For ALL donors - Date/time pancreas placed on ice in box Format: DD/MM/YYYY at HH:MM

1285
Donation details - For ALL donors - Aortic perfusion fluid Categories:
10 - EuroCollins
20 - University of Wisconsin (UW solution), eg ViaSpan
30 - Hyperosmolar citrate (HOC or Marshall`s Solution), eg Soltran
40 - Phosphate buffered sucrose (PBS)
80 - Celsior
90 - Histidine-Tryptophan-Ketoglutarate (HTK or Bretschneider`s Solution), eg Custodiol
98 - Other
99 - Unknown

1286
Donation details - For ALL donors - Aortic perfusion should not be performed with Soltran - if it has been, please explain why Text

1287
Donation details - For ALL donors - Was there any concern about quality of perfusion Categories:
1 - No
2 - Yes

1288
Donation details - For ALL donors - Bench perfusion (before packing) Categories:
1 - No
2 - Yes

1289
Donation details - For ALL donors - Bench perfusion (before packing) - If YES, perfusion fluid Categories:
10 - EuroCollins
20 - University of Wisconsin (UW solution), eg ViaSpan
30 - Hyperosmolar citrate (HOC or Marshall`s Solution), eg Soltran
40 - Phosphate buffered sucrose (PBS)
80 - Celsior
90 - Histidine-Tryptophan-Ketoglutarate (HTK or Bretschneider`s Solution), eg Custodiol
98 - Other
99 - Unknown

1290
Donation details - For ALL donors - Was there any concern about quality of perfusion after bench perfusion Categories:
1 - No
2 - Yes

1291
Donation details - For ALL donors - Separate portal circulation perfusion? Categories:
1 - No
2 - Yes

1292
Donation details - For ALL donors - Separate portal circulation perfusion? - If YES, how perfused? Categories:
1 - Direct through portal vein
2 - Via IMV/SMV

1293
Donation details - For ALL donors - Separate portal circulation perfusion? - If IMV/SMV, please explain why Text

1294
Donation details - For ALL donors - Please record the batch numbers of all perfusion fluid types used - Perfusion fluid, Batch number(s) Text

1295
Anatomical details - Pancreas and liver retrieved en bloc Categories:
1 - No
2 - Yes

1296
Anatomical details - Pancreas and liver retrieved en bloc - If YES, where was bloc split? Categories:
1 - Retrieval centre
2 - Liver and pancreas centre
3 - Other

1297
Anatomical details - Pancreas and liver retrieved en bloc - If other, please specify Text

1298
Anatomical details - Donor iliac artery present Categories:
1 - No
2 - Yes

1299
Anatomical details - Donor iliac vein present Categories:
1 - No
2 - Yes

1300
Anatomical details - Spleen attached Categories:
1 - No
2 - Yes

1301
Anatomical details - Other anatomical details Text

1302
Pancreas damage - Haematomas Categories:
1 - No
2 - Yes
9 - Unknown

1303
Pancreas damage - If haematomas, please specify Text

1304
Pancreas damage - Damage to arterial supply Categories:
1 - No
2 - Yes
9 - Unknown

1305
Pancreas damage - Pancreatic oedema Categories:
1 - No
2 - Yes
9 - Unknown

1306
Pancreas damage - Portal vein length to confluence of SMV/SV (units: mm) Format: string up to 2 characters

1307
Pancreas damage - Pancreatic inflammation Categories:
1 - No
2 - Yes
9 - Unknown

1308
Pancreas damage - Pancreas fatty Categories:
1 - No
2 - Yes
9 - Unknown

1309
Pancreas damage - Hepatic artery from SMA Categories:
1 - No
2 - Yes
9 - Unknown

1310
Pancreas damage - Pancreatic capsule damage Categories:
1 - No
2 - Yes
9 - Unknown

1311
Pancreas damage - Parenchymal damage Categories:
1 - No
2 - Yes
9 - Unknown

1312
Pancreas damage - If parenchymal damage, please specify Text

1313
Pancreas damage - Other Categories:
1 - No
2 - Yes
9 - Unknown

1314
Pancreas damage - If other, please specify Text

1315
Donor preparation - Agents used to flush donor duodenum - Preservation solution Categories:
1 - No
2 - Yes

1316
Donor preparation - Agents used to flush donor duodenum - Preservation solution - If YES, please state which Categories:
10 - EuroCollins
20 - University of Wisconsin (UW solution), eg ViaSpan
30 - Hyperosmolar citrate (HOC or Marshall`s Solution), eg Soltran
40 - Phosphate buffered sucrose (PBS)
80 - Celsior
90 - Histidine-Tryptophan-Ketoglutarate (HTK or Bretschneider`s Solution), eg Custodiol
98 - Other
99 - Unknown

1317
Donor preparation - Agents used to flush donor duodenum - Antibiotic Categories:
1 - No
2 - Yes

1318
Donor preparation - Agents used to flush donor duodenum - Antibiotic - If YES, please state which Text

1319
Donor preparation - Agents used to flush donor duodenum - Iodine Categories:
1 - No
2 - Yes

1320
Donor preparation - Agents used to flush donor duodenum - Iodine - If YES, please state why Text

1321
Donor preparation - Crossmatch material - Lymph node Categories:
1 - No
2 - Yes

1322
Donor preparation - Crossmatch material - Spleen Categories:
1 - No
2 - Yes

1323
Donor preparation - Crossmatch material - Blood Categories:
1 - No
2 - Yes

1324
Donor preparation - Crossmatch material - Cells Categories:
1 - No
2 - Yes

1325
Organ use - Intended use of pancreas at time of retrieval Categories:
1 - Solid organ transplantation
2 - Islet transplantation

1326
Organ use - If pancreas not to be used for solid organ transplantation, please specify - Reason unsuitable Categories (Code Pancreas-B), see listing below

1327
Organ use - If pancreas not to be used for solid organ transplantation, please specify - Reason unsuitable - If code 12, 30, 34, 35 or 98, please specify Text

1328
Organ use - If pancreas not to be used for islet transplantation, please specify - Reason unsuitable Categories (Code Pancreas-B), see listing below

1329
Organ use - If pancreas not to be used for islet transplantation, please specify - Reason unsuitable - If code 12, 30, 34, 35 or 98, please specify Text

1330
General comments - Any other general comments about this donor Text

1331
Transplant centre accepting the whole pancreas Text

1332
Transplant centre accepting the whole pancreas - Anatomical details - Pancreas and liver retrieved en bloc Categories:
1 - No
2 - Yes

1333
Transplant centre accepting the whole pancreas - Anatomical details - Pancreas and liver retrieved en bloc - If YES, where was bloc split? Categories:
1 - Retrieval centre
2 - Liver and pancreas centre
3 - Other

1334
Transplant centre accepting the whole pancreas - Anatomical details - Pancreas and liver retrieved en bloc - If other, please specify Text

1335
Transplant centre accepting the whole pancreas - Anatomical details - Donor iliac artery present Categories:
1 - No
2 - Yes

1336
Transplant centre accepting the whole pancreas - Anatomical details - Donor iliac vein present Categories:
1 - No
2 - Yes

1337
Transplant centre accepting the whole pancreas - Anatomical details - Spleen attached Categories:
1 - No
2 - Yes

1338
Transplant centre accepting the whole pancreas - Anatomical details - Other anatomical details Text

1339
Transplant centre accepting the whole pancreas - Pancreas damage - Haematomas Categories:
1 - No
2 - Yes
9 - Unknown

1340
Transplant centre accepting the whole pancreas - Pancreas damage - If haematomas, please specify Text

1341
Transplant centre accepting the whole pancreas - Pancreas damage - Damage to arterial supply Categories:
1 - No
2 - Yes
9 - Unknown

1342
Transplant centre accepting the whole pancreas - Pancreas damage - Pancreatic oedema Categories:
1 - No
2 - Yes
9 - Unknown

1343
Transplant centre accepting the whole pancreas - Pancreas damage - Portal vein length to confluence of SMV/SV (units: mm) Format: string up to 2 characters

1344
Transplant centre accepting the whole pancreas - Pancreas damage - Pancreatic inflammation Categories:
1 - No
2 - Yes
9 - Unknown

1345
Transplant centre accepting the whole pancreas - Pancreas damage - Pancreas fatty Categories:
1 - No
2 - Yes
9 - Unknown

1346
Transplant centre accepting the whole pancreas - Pancreas damage - Hepatic artery from SMA Categories:
1 - No
2 - Yes
9 - Unknown

1347
Transplant centre accepting the whole pancreas - Pancreas damage - Pancreatic capsule damage Categories:
1 - No
2 - Yes
9 - Unknown

1348
Transplant centre accepting the whole pancreas - Pancreas damage - Parenchymal damage Categories:
1 - No
2 - Yes
9 - Unknown

1349
Transplant centre accepting the whole pancreas - Pancreas damage - If parenchymal damage, please specify Text

1350
Transplant centre accepting the whole pancreas - Pancreas damage - Other Categories:
1 - No
2 - Yes
9 - Unknown

1351
Transplant centre accepting the whole pancreas - Pancreas damage - If other, please specify Text

1352
Transplant centre accepting the whole pancreas - Organ use - Intended use of pancreas Categories:
1 - Solid organ transplantation
2 - Islet transplantation

1353
Transplant centre accepting the whole pancreas - Organ use - If pancreas not to be used for solid organ transplantation, please specify - Reason unsuitable Categories (Code Pancreas-B), see listing below

1354
Transplant centre accepting the whole pancreas - Organ use - If pancreas not to be used for solid organ transplantation, please specify - Reason unsuitable - If code 12, 30, 34, 35 or 98, please specify Text

1355
Transplant centre accepting the whole pancreas - Organ use - If pancreas not to be used for islet transplantation, please specify - Reason unsuitable Categories (Code Pancreas-B), see listing below

1356
Transplant centre accepting the whole pancreas - Organ use - If pancreas not to be used for islet transplantation, please specify - Reason unsuitable - If code 12, 30, 34, 35 or 98, please specify Text

1357
Islet isolation centre Text

1358
Islet isolation centre - Date/time arrived at isolation centre Format: DD/MM/YYYY at HH:MM

1359
Islet isolation centre - Anatomical details - Panceas weight (following preparation for islet isolation) (units: grams) Format: string up to 3 characters

1360
Islet isolation centre - Anatomical details - Duodenum staple in situ Categories:
1 - No
2 - Yes

1361
Islet isolation centre - Anatomical details - Spleen attached Categories:
1 - No
2 - Yes

1362
Islet isolation centre - Anatomical details - Other anatomical details Text

1363
Islet isolation centre - Pancreas damage - Pancreas fibrotic Categories:
1 - No
2 - Yes
9 - Unknown

1364
Islet isolation centre - Pancreas damage - Pancreas nodularity (irregularity) Categories:
1 - No
2 - Yes
9 - Unknown

1365
Islet isolation centre - Pancreas damage - Haematomas Categories:
1 - No
2 - Yes
9 - Unknown

1366
Islet isolation centre - Pancreas damage - If haematomas, please specify Text

1367
Islet isolation centre - Pancreas damage - Pancreatic oedema Categories:
1 - No
2 - Yes
9 - Unknown

1368
Islet isolation centre - Pancreas damage - Pancreatic inflammation Categories:
1 - No
2 - Yes
9 - Unknown

1369
Islet isolation centre - Pancreas damage - Pancreas fatty Categories:
1 - No
2 - Yes
9 - Unknown

1370
Islet isolation centre - Pancreas damage - Pancreatic capsule damage Categories:
1 - No
2 - Yes
9 - Unknown

1371
Islet isolation centre - Pancreas damage - Parenchymal damage Categories:
1 - No
2 - Yes
9 - Unknown

1372
Islet isolation centre - Pancreas damage - If parenchymal damage, please specify Text

1373
Islet isolation centre - Pancreas damage - Other Categories:
1 - No
2 - Yes
9 - Unknown

1374
Islet isolation centre - Pancreas damage - If other, please specify Text

1375
Islet isolation centre - Organ use - Pancreas used for islet isolation Categories:
1 - No
2 - Yes

1376
Islet isolation centre - Organ use - Pancreas used for islet isolation - If YES, date/time of commencement of islet isolation (intraductal collagenase injection) Format: DD/MM/YYYY at HH:MM

1377
Islet isolation centre - Organ use - Islet isolation completed Categories:
1 - No
2 - Yes

1378
Islet isolation centre - Organ use - Post-isolation data - Islet yield (units: x1000 IEQ) Format: string up to 3 characters

1379
Islet isolation centre - Organ use - Post-isolation data - Islet viability (units: %) Format: string up to 3 characters

1380
Islet isolation centre - Organ use - Post-isolation data - Islet purity (units: %) Format: string up to 3 characters

1381
Islet isolation centre - Organ use - Post-isolation data - Packed cell volume (units: ml) Format: NN.N (precision up to one decimal point)

1382
Islet isolation centre - Organ use - Post-isolation data - Endotoxin concentration (units: EU/mg) Format: N.NN (precision up to two decimal points)

1383
Islet isolation centre - Organ use - Final product release data - Islet yield (units: x1000 IEQ) Format: string up to 3 characters

1384
Islet isolation centre - Organ use - Final product release data - Islet viability (units: %) Format: string up to 3 characters

1385
Islet isolation centre - Organ use - Final product release data - Islet purity (units: %) Format: string up to 3 characters

1386
Islet isolation centre - Organ use - Final product release data - Packed cell volume (units: ml) Format: NN.N (precision up to one decimal point)

1387
Islet isolation centre - Organ use - Final product release data - Endotoxin concentration (units: EU/mg) Format: N.NN (precision up to two decimal points)

1388
Islet isolation centre - Organ use - If pancreas not to be used for islet transplantation, please specify - Reason unsuitable Categories (Code Pancreas-B), see listing below

1389
Islet isolation centre - Organ use - If pancreas not to be used for islet transplantation, please specify - Reason unsuitable - If code 12, 30, 34, 35 or 98, please specify Text

1390
Code Pancreas-B (relevant to "Reason unsuitable") Categories (Code Pancreas-B):
11 - Donor unsuitable - age
12 - Donor unsuitable - past history, please specify (separate field)
28 - Poor organ function
30 - Infection, please specify (separate field)
34 - Tumour, please specify (separate field)
35 - Anatomical, please specify (separate field)
36 - Poor organ perfusion
44 - Damaged organ
45 - Contamination
46 - Warm ischaemic time too long
47 - Cold ischaemic time too long
98 - Other, please specify (separate field)
101 - Organ too small (pancreas islets)
102 - Organ fibrotic (pancreas islets)
103 - Insufficient distension with collagenase (pancreas islets)
104 - Insufficient islet yield (pancreas islets)
105 - Insufficient islet viability (pancreas islets)
106 - Insufficient islet purity (pancreas islets)
107 - Packed cell volume too large (pancreas islets)
108 - Organ fatty infiltration (pancreas islets)

5. Pancreas 3 month follow-up (96 variables) -- Additionally a listing of Code Pancreas-C

Select ID Name Description

1391
Follow-up centre Text

1392
Centre code Format: string up to 5 characters

1393
Transplant details - Date of transplant (date surgery commenced) Format: DD/MM/YYYY

1394
Transplant details - Graft number Format: number

1395
Transplant details - Organ(s) transplanted Text

1396
Transfer and non-attendance - The patient has transferred to another unit for follow-up Categories:
1 - If yes, please supply full details of unit now caring for this patient in the box below. Please include date of last contact with the patient.
2 - If you are able to make a final follow-up return, please complete and return this form.

1397
Transfer and non-attendance - The patient has not attended for this follow-up but is expected to attend for future follow-up Categories:
Complete section 7 and return this form.

1398
Transfer and non-attendance - The patient is considered lost to follow-up. Further contact with the patient is not expected Categories:
1 - Please supply the reason for loss to all further follow-up in the box below.
2 - Please include the date of last contact with the patient.
3 - If you are able to make a final follow-up return please complete and return this form.

1399
Transfer and non-attendance - Further details Text

1400
Transfer and non-attendance - Date of last contact with the patient (if exact date cannot be established, then a partial date, for example month and year, will be accepted) Format: DD/MM/YYYY

1401
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Initial graft function Categories:
1 - Immediate function
2 - Partial function (insulin required)
3 - Primary non-function

1402
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Days ventilated Format: string up to 2 characters

1403
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Days in ITU Format: string up to 3 characters

1404
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Has recipient been discharged from hospital? Categories:
1 - No
2 - Yes

1405
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Has recipient been discharged from hospital? - If YES, date of initial discharge following this transplant Format: DD/MM/YYYY

1406
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Diabetic complications (please indicate complications that have occurred since transplant) - Myocardial infarction Categories:
1 - No
2 - Yes

1407
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Diabetic complications (please indicate complications that have occurred since transplant) - CVA Categories:
1 - No
2 - Yes

1408
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Diabetic complications (please indicate complications that have occurred since transplant) - Registered blind Categories:
1 - No
2 - Yes

1409
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Diabetic complications (please indicate complications that have occurred since transplant) - Limb amputation Categories:
1 - No amputation
2 - Major limb amputation
3 - Digital amputation

1410
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Other complications - Has the recipient required hospitalisation due to complications that did not lead to graft failure/patient death? Categories:
1 - No
2 - Yes

1411
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Other complications - Has the recipient required hospitalisation due to complications that did not lead to graft failure/patient death? - If YES, please indicate the complications present - Anastomotic leak Categories:
1 - No
2 - Yes

1412
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Other complications - Has the recipient required hospitalisation due to complications that did not lead to graft failure/patient death? - If YES, please indicate the complications present - CMV infection Categories:
1 - No
2 - Yes

1413
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Other complications - Has the recipient required hospitalisation due to complications that did not lead to graft failure/patient death? - If YES, please indicate the complications present - Urinary tract infection (UTI) Categories:
1 - No
2 - Yes

1414
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Other complications - Has the recipient required hospitalisation due to complications that did not lead to graft failure/patient death? - If YES, please indicate the complications present - Intraperitoneal abscess Categories:
1 - No
2 - Yes

1415
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Other complications - Has the recipient required hospitalisation due to complications that did not lead to graft failure/patient death? - If YES, please indicate the complications present - Pancreatic infection Categories:
1 - No
2 - Yes

1416
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Other complications - Has the recipient required hospitalisation due to complications that did not lead to graft failure/patient death? - If YES, please indicate the complications present - Viral systemic infection Categories:
1 - No
2 - Yes

1417
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Other complications - Has the recipient required hospitalisation due to complications that did not lead to graft failure/patient death? - If YES, please indicate the complications present - Bacterial systemic infection Categories:
1 - No
2 - Yes

1418
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Other complications - Has the recipient required hospitalisation due to complications that did not lead to graft failure/patient death? - If YES, please indicate the complications present - Fungal systemic infection Categories:
1 - No
2 - Yes

1419
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Other complications - Has the recipient required hospitalisation due to complications that did not lead to graft failure/patient death? - If YES, please indicate the complications present - Pancreatitis Categories:
1 - No
2 - Yes

1420
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Other complications - Has the recipient required hospitalisation due to complications that did not lead to graft failure/patient death? - If YES, please indicate the complications present - Other Categories:
1 - No
2 - Yes

1421
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Other complications - Please provide further details of the above complications Text

1422
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Other complications - Number of laparotomies performed since transplant? (No laparotomies = 0) Format: number

1423
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Rejection - Number of treated pancreas rejection episodes in the first 3 months post-transplant (No rejection = 0) Format: number

1424
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Rejection - If one or more, date of first episode Format: DD/MM/YYYY

1425
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Rejection - Were any rejection episodes treated following a protocol biopsy? Categories:
1 - No
2 - Yes

1426
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Employment status (Replace `work` with `study` for recipients in full-time education) Categories:
11 - Working - full time
12 - Able to work - chooses not to
13 - Able to work - unable to find work
14 - Working part time - by choice
15 - Working part time - due to disease
16 - Unable to work - due to disease
17 - Hospitalised
18 - Other
19 - Unknown

1427
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Employment status - If other, please specify Text

1428
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Has this recipient developed evidence of a primary or recurrent disease in the pancreatic graft during the first 3 months post-transplant? (exclude infection, large vessel disease, outflow obstruction and chronic allograft nephropathy) Categories:
1 - No
2 - Yes

1429
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Malignancy details - Has the recipient developed post-transplant lymphoproliferative disease (PTLD) or lymphoma in the first 3 months post-transplant? Categories:
1 - No
2 - Yes

1430
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Malignancy details - Has the recipient developed a malignancy in the first 3 months post-transplant (excluding PTLD, lymphoma and cervical dysplasia)? Categories:
1 - No
2 - Yes

1431
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Malignancy details - Record 1 - Type of malignancy Text

1432
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Malignancy details - Record 1 - ICD10 code Format: NNN.N (precision up to one decimal point)

1433
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Malignancy details - Record 1 - Date first diagnosed Format: DD/MM/YYYY

1434
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Malignancy details - Record 1 - Could the malignancy be of donor origin? Categories:
1 - No evidence
2 - Yes - very likely
3 - Yes - possibly

1435
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Malignancy details - Record 2 - Type of malignancy Text

1436
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Malignancy details - Record 2 - ICD10 code Format: NNN.N (precision up to one decimal point)

1437
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Malignancy details - Record 2 - Date first diagnosed Format: DD/MM/YYYY

1438
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Malignancy details - Record 2 - Could the malignancy be of donor origin? Categories:
1 - No evidence
2 - Yes - very likely
3 - Yes - possibly

1439
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Malignancy details - Record 3 - Type of malignancy Text

1440
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Malignancy details - Record 3 - ICD10 code Format: NNN.N (precision up to one decimal point)

1441
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Malignancy details - Record 3 - Date first diagnosed Format: DD/MM/YYYY

1442
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Malignancy details - Record 3 - Could the malignancy be of donor origin? Categories:
1 - No evidence
2 - Yes - very likely
3 - Yes - possibly

1443
Graft and recipient status - Has the pancreas graft failed? Categories:
1 - No
2 - Yes

1444
Graft and recipient status - Has the pancreas graft failed? - If YES: a) Date of failure Format: DD/MM/YYYY

1445
Graft and recipient status - Has the pancreas graft failed? - If YES: b) Cause of failure Categories:
1 - Vascular thrombosis
2 - Infection
3 - Bleeding
4 - Anastomotic leak
5 - Pancreatitis
6 - Primary non-function
7 - Patient declined medication
8 - Hyperacute rejection
9 - Acute rejection
10 - Chronic rejection
11 - Preservation / procurement problem
90 - Death with a functioning graft
98 - Other
99 - Unknown

1446
Graft and recipient status - Has the pancreas graft failed? - If YES: b) Cause of failure - If other (98), please specify Text

1447
Graft and recipient status - Has the pancreas graft failed? - If YES: b) Cause of failure - If pancreatitis, was this in the native or grafted pancreas? Categories:
1 - Native
2 - Grafted

1448
Graft and recipient status - Has the pancreas graft failed? - If YES: c) Is the pancreas graft still in situ? Categories:
1 - No
2 - Yes

1449
Graft and recipient status - Has the pancreas graft failed? - If YES: c) Is the pancreas graft still in situ? - If NO, date of graft removal Format: DD/MM/YYYY

1450
Graft and recipient status - Has the recipient died? Categories:
1 - No
2 - Yes

1451
Graft and recipient status - Has the recipient died? - If YES: a) Date of death Format: DD/MM/YYYY

1452
Graft and recipient status - Has the recipient died? - If YES: b) Cause of death - Item 1 - Primary Categories (Code Pancreas-C), see listing below

1453
Graft and recipient status - Has the recipient died? - If YES: b) Cause of death - Item 2 - Secondary Categories (Code Pancreas-C), see listing below

1454
Graft and recipient status - Has the recipient died? - If YES: b) Cause of death - If other (98), please specify Text

1455
Graft and recipient status - Has the recipient died? - If YES: b) Cause of death - If pancreatitis (62), was this in the native or grafted pancreas? Categories:
1 - Native
2 - Grafted

1456
Clinical assessment - Date of clinical assessment of functioning graft Format: DD/MM/YYYY

1457
Clinical assessment - Has the recipient been insulin independent at all since transplant? Categories:
1 - No
2 - Yes

1458
Clinical assessment - Current graft function Categories:
1 - Insulin independent
2 - Partial function
3 - No function

1459
Clinical assessment - Current graft function - If currently insulin independent: Random blood glucose (units: mmol/l) Format: NN.N (precision up to one decimal point)

1460
Clinical assessment - Current graft function - If currently insulin independent: IFCC-HbA1c (units: mmol/mol) Format: string up to 3 characters

1461
Clinical assessment - Current graft function - If currently insulin independent: Date insulin ceased Format: DD/MM/YYYY

1462
Clinical assessment - Current graft function - If currently partial or no function: Current insulin dose (units: units/24hr) Format: string up to 3 characters

1463
Clinical assessment - Current graft function - If currently partial or no function: Date insulin resumed (if previously insulin independent at any time since transplant) Format: DD/MM/YYYY

1464
Clinical assessment - Serum creatinine measured between 10 and 14 weeks post-transplant (units: umol/l, micro-mole per litre) Format: string up to 4 characters

1465
Clinical assessment - Serum creatinine measured between 10 and 14 weeks post-transplant - Measured on Format: DD/MM/YYYY

1466
Clinical assessment - Recipient weight at time of assessment (units: kg) Format: NNN.N (precision up to one decimal point)

1467
Clinical assessment - Bladder drained? Categories:
1 - No
2 - Yes

1468
Clinical assessment - Bladder drained? - If YES, conversion to enteric drainage? Categories:
1 - No
2 - Yes

1469
Clinical assessment - Bladder drained? - If YES, conversion to enteric drainage? - If YES: a) Date of conversion Format: DD/MM/YYYY

1470
Clinical assessment - Bladder drained? - If YES, conversion to enteric drainage? - If YES: b) Reason for conversion Categories:
1 - Patient choice
2 - Complications

1471
Clinical assessment - Bladder drained? - If YES, conversion to enteric drainage? - If YES: b) Reason for conversion - If COMPLICATIONS (2), please specify Text

1472
Clinical assessment - Current immunosuppressive drugs at date of assessment - Ciclosporin Categories:
1 - No
2 - Yes
9 - Uknown

1473
Clinical assessment - Current immunosuppressive drugs at date of assessment - Ciclosporin (units: total daily dose in mg per day) Format: NNNN.N (precision up to one decimal point)

1474
Clinical assessment - Current immunosuppressive drugs at date of assessment - Tacrolimus Categories:
1 - No
2 - Yes
9 - Uknown

1475
Clinical assessment - Current immunosuppressive drugs at date of assessment - Tacrolimus (units: total daily dose in mg per day) Format: NNNN.N (precision up to one decimal point)

1476
Clinical assessment - Current immunosuppressive drugs at date of assessment - Azathioprine Categories:
1 - No
2 - Yes
9 - Uknown

1477
Clinical assessment - Current immunosuppressive drugs at date of assessment - Azathioprine (units: total daily dose in mg per day) Format: NNNN.N (precision up to one decimal point)

1478
Clinical assessment - Current immunosuppressive drugs at date of assessment - Mycophenolate (any) Categories:
1 - No
2 - Yes
9 - Uknown

1479
Clinical assessment - Current immunosuppressive drugs at date of assessment - Mycophenolate (any) (units: total daily dose in mg per day) Format: NNNN.N (precision up to one decimal point)

1480
Clinical assessment - Current immunosuppressive drugs at date of assessment - Sirolimus / Everolimus Categories:
1 - No
2 - Yes
9 - Uknown

1481
Clinical assessment - Current immunosuppressive drugs at date of assessment - Sirolimus / Everolimus (units: total daily dose in mg per day) Format: NNNN.N (precision up to one decimal point)

1482
Clinical assessment - Current immunosuppressive drugs at date of assessment - Prednisolone / Prednisone Categories:
1 - No
2 - Yes
9 - Uknown

1483
Clinical assessment - Current immunosuppressive drugs at date of assessment - Prednisolone / Prednisone (units: total daily dose in mg per day) Format: NNNN.N (precision up to one decimal point)

1484
Clinical assessment - Current immunosuppressive drugs at date of assessment - Other Categories:
1 - No
2 - Yes
9 - Uknown

1485
Clinical assessment - Current immunosuppressive drugs at date of assessment - Other (units: total daily dose in mg per day) Format: NNNN.N (precision up to one decimal point)

1486
Clinical assessment - Current immunosuppressive drugs at date of assessment - If other, please specify Text

1487
Code Pancreas-C (relevant to "Cause of death") Categories (Code Pancreas-C):
11 - Cardiothoracic - Myocardial ischaemia and infarction
12 - Cardiothoracic - Hyperkalaemia
13 - Cardiothoracic - Haemorrhagic pericarditis
14 - Cardiothoracic - Other causes of cardiac failure
15 - Cardiothoracic - Sudden unexplained cardiac death
16 - Cardiothoracic - Hypertensive cardiac failure
17 - Cardiothoracic - Hypokalaemia
18 - Cardiothoracic - Fluid overload
19 - Cardiothoracic - Elevated PVR / Pulmonary hypertension
20 - Cardiothoracic - Airway dehiscence
75 - Cardiothoracic - Early graft dysfunction
76 - Cardiothoracic - Cardiac tamponade
77 - Cardiothoracic - Acute Respiratory Death Syndrome (ARDS)
78 - Cardiothoracic - Respiratory failure
21 - Vascular - Pulmonary embolus
22 - Vascular - Cerebrovascular accident
24 - Vascular - Haemorrhage - from graft site
25 - Vascular - Haemorrhage - from vascular access or dialysis circuit
26 - Vascular - Haemorrhage - from ruptured vascular aneurysm (not codes 22 or 23)
27 - Vascular - Haemorrhage - from surgery (not codes 23, 24 or 26)
28 - Vascular - Other haemorrhage (not codes 23-27)
30 - Infection - Pulmonary infection - protozoal
31 - Infection - Pulmonary infection - bacterial
32 - Infection - Pulmonary infection - viral
33 - Infection - Pulmonary infection - fungal
34 - Infection - Infections elsewhere (except viral hepatitis, see codes 41-42)
35 - Infection - Septicaemia
36 - Infection - Tuberculosis - lung
37 - Infection - Tuberculosis - elsewhere
38 - Infection - Generalised viral infection
39 - Infection - Peritonitis (not code 70)
41 - Liver disease - Liver - due to hepatitis B virus
42 - Liver disease - Liver - other viral hepatitis
43 - Liver disease - Liver - drug toxicity
44 - Liver disease - Cirrhosis - not viral
45 - Liver disease - Cystic liver disease
46 - Liver disease - Liver failure - cause unknown
23 - Gastrointestinal - Gastrointestinal haemorrhage
29 - Gastrointestinal - Mesenteric infarction
62 - Gastrointestinal - Pancreatitis
70 - Gastrointestinal - Sclerosing (or adhesive) peritoneal disease
71 - Gastrointestinal - Perforation of peptic ulcer
72 - Gastrointestinal - Perforation of colon
51 - Social - Patient refused further treatment
52 - Social - Known or suspected suicide
53 - Social - Therapy ceased for any other reason
47 - Miscellaneous - Renal failure
48 - Miscellaneous - Recurrent primary disease - benign
49 - Miscellaneous - Recurrent primary disease - malignant
61 - Miscellaneous - Uraemia caused by graft failure
63 - Miscellaneous - Bone marrow depression
64 - Miscellaneous - Cachexia
66 - Miscellaneous - Lymphoid malignant disease - possibly induced by immunosuppressive therapy
67 - Miscellaneous - Lymphoid malignant disease - not induced by immunosuppressive therapy
69 - Miscellaneous - Dementia
73 - Miscellaneous - Non-lymphoid malignant disease - possibly induced by immunosuppressive therapy
74 - Miscellaneous - Non-lymphoid malignant disease - not induced by immunosuppressive therapy
79 - Miscellaneous - Multi-system failure
81 - Accident - related to treatment
82 - Accident - unrelated to treatment
90 - Other - Donor organ failure
98 - Other - Other identified cause of death
99 - Other - Unknown

6. Pancreas 12 month follow-up (96 variables)

Select ID Name Description

1488
Follow-up centre Text

1489
Centre code Format: string up to 5 characters

1490
Transplant details - Date of transplant (date surgery commenced) Format: DD/MM/YYYY

1491
Transplant details - Graft number Format: number

1492
Transplant details - Organ(s) transplanted Text

1493
Transfer and non-attendance - The patient has transferred to another unit for follow-up Categories:
1 - If yes, please supply full details of unit now caring for this patient in the box below. Please include date of last contact with the patient.
2 - If you are able to make a final follow-up return, please complete and return this form.

1494
Transfer and non-attendance - The patient has not attended for this follow-up but is expected to attend for future follow-up Categories:
Complete section 8 and return this form.

1495
Transfer and non-attendance - The patient is considered lost to follow-up. Further contact with the patient is not expected Categories:
1 - Please supply the reason for loss to all further follow-up in the box below.
2 - Please include the date of last contact with the patient.
3 - If you are able to make a final follow-up return please complete and return this form.

1496
Transfer and non-attendance - Further details Text

1497
Transfer and non-attendance - Date of last contact with the patient (if exact date cannot be established, then a partial date, for example month and year, will be accepted) Format: DD/MM/YYYY

1498
Post-operative course - Number of treated pancreas rejection episodes in the last 12 months (No rejection = 0) Number

1499
Post-operative course - For first annual assessment only, please enter date of first episode after this transplant Format: DD/MM/YYYY

1500
Post-operative course - Employment status (Replace `work` with `study` for recipients in full-time education) Categories:
11 - Working - full time
12 - Able to work - chooses not to
13 - Able to work - unable to find work
14 - Working part time - by choice
15 - Working part time - due to disease
16 - Unable to work - due to disease
17 - Hospitalised
18 - Other
19 - Unknown

1501
Post-operative course - Employment status - If other, please specify Text

1502
Post-operative course - Smoking - Pipe / cigars Categories:
1 - No
2 - Yes

1503
Post-operative course - Smoking - Cigarettes Categories:
1 - No
2 - Yes
3 - Ex

1504
Post-operative course - Smoking - Cigarettes - If YES, number / day (cigarettes only) Format: string up to 2 characters

1505
Post-operative course - Smoking - Cigarettes - If EX, years since stop (to nearest year, 6 months = 1 year) Format: string up to 2 characters

1506
Post-operative course - Has this recipient developed evidence of a primary or recurrent disease in the pancreatic graft during the past 12 months? (excluding infection, large vessel disease, outflow obstruction and chronic allograft nephropathy) Categories:
1 - No
2 - Yes

1507
Post-operative course - Malignancy details - Has the recipient developed post-transplant lymphoproliferative disease (PTLD) or lymphoma in the past 12 months? Categories:
1 - No
2 - Yes

1508
Post-operative course - Malignancy details - Has the recipient developed a malignancy in the past 12 months (excluding PTLD, lymphoma and cervical dysplasia)? Categories:
1 - No
2 - Yes

1509
Post-operative course - Malignancy details - Record 1 - Type of malignancy Text

1510
Post-operative course - Malignancy details - Record 1 - ICD10 code Format: NNN.N (precision up to one decimal point)

1511
Post-operative course - Malignancy details - Record 1 - Date first diagnosed Format: DD/MM/YYYY

1512
Post-operative course - Malignancy details - Record 1 - Could the malignancy be of donor origin? Categories:
1 - No evidence
2 - Yes - very likely
3 - Yes - possibly

1513
Post-operative course - Malignancy details - Record 2 - Type of malignancy Text

1514
Post-operative course - Malignancy details - Record 2 - ICD10 code Format: NNN.N (precision up to one decimal point)

1515
Post-operative course - Malignancy details - Record 2 - Date first diagnosed Format: DD/MM/YYYY

1516
Post-operative course - Malignancy details - Record 2 - Could the malignancy be of donor origin? Categories:
1 - No evidence
2 - Yes - very likely
3 - Yes - possibly

1517
Post-operative course - Malignancy details - Record 3 - Type of malignancy Text

1518
Post-operative course - Malignancy details - Record 3 - ICD10 code Format: NNN.N (precision up to one decimal point)

1519
Post-operative course - Malignancy details - Record 3 - Date first diagnosed Format: DD/MM/YYYY

1520
Post-operative course - Malignancy details - Record 3 - Could the malignancy be of donor origin? Categories:
1 - No evidence
2 - Yes - very likely
3 - Yes - possibly

1521
Post-operative course - Pregnancy (female recipients only) - Has the recipient been pregnant in the last 12 months? (Pregnancy definition includes: still ongoing; therapeutic termination; miscarriage (<24 weeks); ectopic; mole; fetal death in utero (<24 weeks); liveborn (>=24 weeks); stillbirth (>=24 weeks); neonatal death) Categories:
1 - No
2 - Yes

1522
Graft and recipient status - Has the pancreas graft failed? Categories:
1 - No
2 - Yes

1523
Graft and recipient status - Has the pancreas graft failed? - If YES: a) Date of failure Format: DD/MM/YYYY

1524
Graft and recipient status - Has the pancreas graft failed? - If YES: b) Cause of failure Categories:
1 - Vascular thrombosis
2 - Infection
3 - Bleeding
4 - Anastomotic leak
5 - Pancreatitis
6 - Primary non-function
7 - Patient declined medication
8 - Hyperacute rejection
9 - Acute rejection
10 - Chronic rejection
11 - Preservation / procurement problem
90 - Death with a functioning graft
98 - Other
99 - Unknown

1525
Graft and recipient status - Has the pancreas graft failed? - If YES: b) Cause of failure - If other (98), please specify Text

1526
Graft and recipient status - Has the pancreas graft failed? - If YES: b) Cause of failure - If pancreatitis, was this in the native or grafted pancreas? Categories:
1 - Native
2 - Grafted

1527
Graft and recipient status - Has the pancreas graft failed? - If YES: c) Is the pancreas graft still in situ? Categories:
1 - No
2 - Yes

1528
Graft and recipient status - Has the pancreas graft failed? - If YES: c) Is the pancreas graft still in situ? - If NO, date of graft removal Format: DD/MM/YYYY

1529
Graft and recipient status - Has the recipient died? Categories:
1 - No
2 - Yes

1530
Graft and recipient status - Has the recipient died? - If YES: a) Date of death Format: DD/MM/YYYY

1531
Graft and recipient status - Has the recipient died? - If YES: b) Cause of death - Item 1 - Primary Categories (Code Pancreas-C), see listing separately

1532
Graft and recipient status - Has the recipient died? - If YES: b) Cause of death - Item 2 - Secondary Categories (Code Pancreas-C), see listing separately

1533
Graft and recipient status - Has the recipient died? - If YES: b) Cause of death - If other (98), please specify Text

1534
Graft and recipient status - Has the recipient died? - If YES: b) Cause of death - If pancreatitis (62), was this in the native or grafted pancreas? Categories:
1 - Native
2 - Grafted

1535
Post-transplant complications - Total number of days as inpatient during the last 12 months (excluding transplant admission) Format: string up to 3 characters

1536
Post-transplant complications - Number of readmissions over the last 12 months (no readmissions = 0) (If READMITTED, indicate one primary reason for each readmission not leading to graft failure / patient death over the last 12 months) Format: string up to 2 characters

1537
Post-transplant complications - Diabetic complications - Myocardial infarction - Number of readmissions Format: string up to 2 characters

1538
Post-transplant complications - Diabetic complications - CVA - Number of readmissions Format: string up to 2 characters

1539
Post-transplant complications - Diabetic complications - Major limb amputation - Number of readmissions Format: string up to 2 characters

1540
Post-transplant complications - Diabetic complications - Digital amputation - Number of readmissions Format: string up to 2 characters

1541
Post-transplant complications - Other complications - Anastomotic leak - Number of readmissions Format: string up to 2 characters

1542
Post-transplant complications - Other complications - CMV infection - Number of readmissions Format: string up to 2 characters

1543
Post-transplant complications - Other complications - Urinary tract infection (UTI) - Number of readmissions Format: string up to 2 characters

1544
Post-transplant complications - Other complications - Intraperitoneal abscess - Number of readmissions Format: string up to 2 characters

1545
Post-transplant complications - Other complications - Pancreatic infection - Number of readmissions Format: string up to 2 characters

1546
Post-transplant complications - Other complications - Viral systemic infection - Number of readmissions Format: string up to 2 characters

1547
Post-transplant complications - Other complications - Bacterial systemic infection - Number of readmissions Format: string up to 2 characters

1548
Post-transplant complications - Other complications - Fungal systemic infection - Number of readmissions Format: string up to 2 characters

1549
Post-transplant complications - Other complications - Pancreatitis - Number of readmissions Format: string up to 2 characters

1550
Post-transplant complications - Other complications - Other - Number of readmissions Format: string up to 2 characters

1551
Post-transplant complications - Please provide further details of the above complications Text

1552
Post-transplant complications - Has the recipient become registered blind in the last 12 months? (last 9 months if first annual assessment) Categories:
1 - No
2 - Yes

1553
Clinical assessment - Date of clinical assessment of functioning graft Format: DD/MM/YYYY

1554
Clinical assessment - Has the recipient been insulin independent in the last 12 months? Categories:
1 - No
2 - Yes

1555
Clinical assessment - Current graft function Categories:
1 - Insulin independent
2 - Partial function
3 - No function

1556
Clinical assessment - Current graft function - If currently insulin independent: Random blood glucose (units: mmol/l) Format: NN.N (precision up to one decimal point)

1557
Clinical assessment - Current graft function - If currently insulin independent: IFCC-HbA1c (units: mmol/mol) Format: string up to 3 characters

1558
Clinical assessment - Current graft function - If currently insulin independent: Date insulin ceased Format: DD/MM/YYYY

1559
Clinical assessment - Current graft function - If currently partial or no function: Current insulin dose (units: units/24hr) Format: string up to 3 characters

1560
Clinical assessment - Current graft function - If currently partial or no function: Date insulin resumed (if previously insulin independent at any time since transplant) Format: DD/MM/YYYY

1561
Clinical assessment - Serum creatinine measured nearest graft anniversary (for the first annual assessment please report level measured between 11 and 13 months post-transplant) (units: umol/l, micro-mole per litre) Format: string up to 4 characters

1562
Clinical assessment - Serum creatinine measured nearest graft anniversary - Measured on Format: DD/MM/YYYY

1563
Clinical assessment - Recipient weight at time of assessment (units: kg) Format: NNN.N (precision up to one decimal point)

1564
Clinical assessment - Bladder drained? Categories:
1 - No
2 - Yes

1565
Clinical assessment - Bladder drained? - If YES, conversion to enteric drainage? Categories:
1 - No
2 - Yes

1566
Clinical assessment - Bladder drained? - If YES, conversion to enteric drainage? - If YES: a) Date of conversion Format: DD/MM/YYYY

1567
Clinical assessment - Bladder drained? - If YES, conversion to enteric drainage? - If YES: b) Reason for conversion Categories:
1 - Patient choice
2 - Complications

1568
Clinical assessment - Bladder drained? - If YES, conversion to enteric drainage? - If YES: b) Reason for conversion - If COMPLICATIONS (2), please specify Text

1569
Clinical assessment - Current immunosuppressive drugs at date of assessment - Ciclosporin Categories:
1 - No
2 - Yes
9 - Uknown

1570
Clinical assessment - Current immunosuppressive drugs at date of assessment - Ciclosporin (units: total daily dose in mg per day) Format: NNNN.N (precision up to one decimal point)

1571
Clinical assessment - Current immunosuppressive drugs at date of assessment - Tacrolimus Categories:
1 - No
2 - Yes
9 - Uknown

1572
Clinical assessment - Current immunosuppressive drugs at date of assessment - Tacrolimus (units: total daily dose in mg per day) Format: NNNN.N (precision up to one decimal point)

1573
Clinical assessment - Current immunosuppressive drugs at date of assessment - Azathioprine Categories:
1 - No
2 - Yes
9 - Uknown

1574
Clinical assessment - Current immunosuppressive drugs at date of assessment - Azathioprine (units: total daily dose in mg per day) Format: NNNN.N (precision up to one decimal point)

1575
Clinical assessment - Current immunosuppressive drugs at date of assessment - Mycophenolate (any) Categories:
1 - No
2 - Yes
9 - Uknown

1576
Clinical assessment - Current immunosuppressive drugs at date of assessment - Mycophenolate (any) (units: total daily dose in mg per day) Format: NNNN.N (precision up to one decimal point)

1577
Clinical assessment - Current immunosuppressive drugs at date of assessment - Sirolimus / Everolimus Categories:
1 - No
2 - Yes
9 - Uknown

1578
Clinical assessment - Current immunosuppressive drugs at date of assessment - Sirolimus / Everolimus (units: total daily dose in mg per day) Format: NNNN.N (precision up to one decimal point)

1579
Clinical assessment - Current immunosuppressive drugs at date of assessment - Prednisolone / Prednisone Categories:
1 - No
2 - Yes
9 - Uknown

1580
Clinical assessment - Current immunosuppressive drugs at date of assessment - Prednisolone / Prednisone (units: total daily dose in mg per day) Format: NNNN.N (precision up to one decimal point)

1581
Clinical assessment - Current immunosuppressive drugs at date of assessment - Other Categories:
1 - No
2 - Yes
9 - Uknown

1582
Clinical assessment - Current immunosuppressive drugs at date of assessment - Other (units: total daily dose in mg per day) Format: NNNN.N (precision up to one decimal point)

1583
Clinical assessment - Current immunosuppressive drugs at date of assessment - If other, please specify Text

E. Pancreatic Islet Transplant (513 variables)

1. Recipient details (3 variables)

Select ID Name Description

1584
Recipient ODT number Format: string up to 6 characters

1585
Transplant centre Text

1586
Centre code Format: string up to 5 characters

2. Transplant details (6 variables)

Select ID Name Description

1587
Date of transplant Format: DD/MM/YYYY

1588
Organs transplanted Categories:
1 - Islet only
2 - Islet after Kidney
3 - Simultaneous islet and Kidney
4 - Other, please specify
If code 4 (Other), then can be additionally specified in a separate field

1589
Organs transplanted - Other Text

1590
Procedure Categories:
1 - Percutaneous transhepatic portal vein cannulation
2 - Laparoscopic intraportal transplant
3 - Laparotomy and intraportal transplant
4 - Other procedure, please specify
If code 4 (Other procedure), then can be additionally specified in a separate field

1591
Procedure - Other procedure Text

1592
Type of transplant Categories:
1 - Routine
2 - Priority

3. Clinical status pre-transplant (or since last islet transplant) (53 variables)

Select ID Name Description

1593
Metabolic complications - Number of severe hypoglycaemic events since registration / last islet transplant (ADA definition) Format: number

1594
Metabolic complications - Number of admissions with diabetic ketoacidosis since registration / last islet transplant Format: number

1595
Previous vascular complications - Angina Categories:
1 - No
2 - Yes

1596
Previous vascular complications - Transient ischemic attack Categories:
1 - No
2 - Yes

1597
Previous vascular complications - Foot ulceration Categories:
1 - No
2 - Previous
3 - Current

1598
Previous vascular complications - Myocardial infarction Categories:
1 - No
2 - Yes

1599
Previous vascular complications - CVA Categories:
1 - No
2 - Yes

1600
Previous vascular complications - Limb amputation Categories:
1 - No amputation
2 - Major limb amputation
3 - Digital amputation

1601
Previous vascular complications - PCI Categories:
1 - No
2 - Angioplasty
3 - Stent

1602
Previous vascular complications - Intermittent claudication Categories:
1 - No
2 - Yes

1603
Previous vascular complications - Coronary artery bypass graft Categories:
1 - No
2 - Yes

1604
Previous vascular complications - PVD Intervention Categories:
0 - None
1 - Angioplasty
2 - Bypass graft

1605
Diabetic eye disease - Diabetic retinopathy confirmed by dilated digital photography Categories:
1 - No
2 - Yes

1606
Diabetic eye disease - Registered blind Categories:
1 - No
2 - Yes - blind
3 - Yes - impaired

1607
Diabetic eye disease - Laser photocoagulation Categories:
1 - No
2 - Yes

1608
Diabetic eye disease - Cataract Categories:
1 - No
2 - Yes
3 - Extraction

1609
Diabetic eye disease - Vitreous haemorrhage Categories:
1 - No
2 - Yes

1610
Diabetic eye disease - Vitrectomy Categories:
1 - No
2 - Yes

1611
Nephropathy / neuropathy / musculoskeletal (record current status) - Proteinuria Categories:
1 - No
2 - Microalbuminuria
3 - Macroalbuminuria

1612
Nephropathy / neuropathy / musculoskeletal (record current status) - Ulceration Categories:
1 - No
2 - Yes

1613
Nephropathy / neuropathy / musculoskeletal (record current status) - Postural hypotension Categories:
1 - No
2 - Yes

1614
Nephropathy / neuropathy / musculoskeletal (record current status) - Erectile/sexual dysfunction Categories:
1 - No
2 - Yes

1615
Nephropathy / neuropathy / musculoskeletal (record current status) - Peripheral neuropathy Categories:
1 - No
2 - Yes

1616
Nephropathy / neuropathy / musculoskeletal (record current status) - Gastroparesis Categories:
1 - No
2 - Yes

1617
Nephropathy / neuropathy / musculoskeletal (record current status) - Autonomic sweating Categories:
1 - No
2 - Yes

1618
Nephropathy / neuropathy / musculoskeletal (record current status) - Charcot foot Categories:
1 - No
2 - Yes

1619
Nephropathy / neuropathy / musculoskeletal (record current status) - Neuropathic pain score (0-10, 0 = no pain) Format: number

1620
Nephropathy / neuropathy / musculoskeletal (record current status) - Diabetic enteropathy Categories:
1 - No
2 - Yes

1621
Nephropathy / neuropathy / musculoskeletal (record current status) - Autonomic bladder dysfunction Categories:
1 - No
2 - Yes

1622
Nephropathy / neuropathy / musculoskeletal (record current status) - Cheiroarthropathy Categories:
1 - No
2 - Yes

1623
Nephropathy / neuropathy / musculoskeletal (record current status) - Mononeuropathy Categories:
1 - No
2 - Yes

1624
Other autoimmune disease (should be actively excluded) - Thyroid disease Categories:
1 - No
2 - Yes

1625
Other autoimmune disease (should be actively excluded) - Addison`s disease Categories:
1 - No
2 - Yes

1626
Other autoimmune disease (should be actively excluded) - Coeliac disease Categories:
1 - No
2 - Yes

1627
Other autoimmune disease (should be actively excluded) - Cause of diabetes Categories:
1 - Type 1
2 - Type 2
3 - Other (eg pancreatectomy)
If code 3 (Other), then can be additionally specified in a separate field

1628
Other autoimmune disease (should be actively excluded) - Cause of diabetes - Other (eg pancreatectomy) Text

1629
Other autoimmune disease (should be actively excluded) - Year of diagnosis (If unknown enter 9999) Format: YYYY

1630
Pre-transplant examination / laboratory values - IFCC-HbA1c (units: mmol/mol) Format: string up to 3 characters

1631
Pre-transplant examination / laboratory values - Measured on Format: DD/MM/YYYY

1632
Pre-transplant examination / laboratory values - ALT (units: U/L) Format: string up to 3 characters

1633
Pre-transplant examination / laboratory values - Serum urea (units: mmol/l) Format: string up to 4 characters

1634
Pre-transplant examination / laboratory values - Serum creatinine (units: umol/l, micro-mole per litre) Format: string up to 4 characters

1635
Pre-transplant examination / laboratory values - Serum albumin (units: umol/l, micro-mole per litre) Format: string up to 4 characters

1636
Pre-transplant examination / laboratory values - Recipient height (units: cm) Format: string up to 3 characters

1637
Pre-transplant examination / laboratory values - Recipient weight (units: kg) Format: string up to 4 characters

1638
Pre-transplant examination / laboratory values - 24 hour urine protein excretion (units: mg/24hr) Format: string up to 5 characters

1639
Pre-transplant examination / laboratory values - Visual acuity - Right Eye (6/6, 6/9, 6/12 etc., CF for counting fingers, HM for hand movements at 1 metre, LP for light perception, NP for no light perception) Format: string up to 3 characters

1640
Pre-transplant examination / laboratory values - Visual acuity - Left Eye (6/6, 6/9, 6/12 etc., CF for counting fingers, HM for hand movements at 1 metre, LP for light perception, NP for no light perception) Format: string up to 3 characters

1641
Pre-transplant examination / laboratory values - Recipient on dialysis immediately prior to transplant Categories:
1 - Haemodialysis
2 - Peritoneal dialysis
3 - Not on dialysis

1642
Pre-transplant examination / laboratory values - If on dialysis initial start date (If previously transplanted, date of return to dialysis) Format: DD/MM/YYYY

1643
Pre-transplant examination / laboratory values - Insulin administration method Categories:
1 - bd/tid
2 - MDII
3 - CSII

1644
Pre-transplant examination / laboratory values - Insulin dose prior to transplant (units: units/24hr) Format: string up to 3 characters

1645
Pre-transplant examination / laboratory values - Other glucose lowering agent used Categories:
1 - No
2 - Yes

4. Additional recipient details pre-transplant (11 variables)

Select ID Name Description

1646
Adult Low Blood Sugar Survey Score Format: string up to 3 characters

1647
Clarke Hypoglycaemia Questionnaire Score Format: string up to 3 characters

1648
Psychosocial Questionnaire Score (Please use QOL-Q diabetes to calculate score) Format: string up to 4 characters

1649
Employment status (`Replace `work` with `study` for recipients in full time education) Categories:
11 - Working - full time
12 - Able to work - chooses not to
13 - Able to work - unable to find work
14 - Working part time - by choice
15 - Working part time - due to disease
16 - Unable to work - due to disease
17 - Hospitalised
18 - Other
19 - Unknown
If code 18 (Other), then can be additionally specified in a separate field

1650
Employment status (`Replace `work` with `study` for recipients in full time education) - Other Text

1651
Smoking details - Pipe / Cigars Categories:
1 - No
2 - Yes

1652
Smoking details - Alcohol intake (units/week) Format: string up to 2 characters

1653
Smoking details - Cigarettes Categories:
1 - No
2 - Yes
3 - Ex-smoker

1654
Smoking details - If YES, no.day (Cigarettes only) Format: string up to 2 characters

1655
Smoking details - If Ex-smoker, years since stop (To nearest years, 6 months = 1 year) Format: string up to 2 characters

1656
Smoking details - Total exposure in pack year Format: string up to 2 characters

5. Pre-transplant virology (14 variables)

Select ID Name Description

1657
Hepatitis B - Surface Ag(HBsAg) Categories:
1 - Negative
2 - Positive
7 - Not tested
9 - Unknown

1658
Hepatitis B - If negative (1) HBsAb Categories:
1 - Negative
2 - Positive
7 - Not tested
9 - Unknown

1659
Hepatitis B - If positive (2) e-antigen Categories:
1 - Negative
2 - Positive
7 - Not tested
9 - Unknown

1660
Hepatitis B - If positive (2) e-antibody Categories:
1 - Negative
2 - Positive
7 - Not tested
9 - Unknown

1661
CMV Categories:
1 - Negative
2 - Positive
7 - Not tested
9 - Unknown

1662
HIV Categories:
1 - Negative
2 - Positive
7 - Not tested
9 - Unknown

1663
Hepatitis C - Antibody test Categories:
1 - Negative
2 - Positive
7 - Not tested
9 - Unknown

1664
Hepatitis C - If positive (2) HCV RNA (PCR) Categories:
1 - Negative
2 - Positive
7 - Not tested
9 - Unknown

1665
Epstein-Barr Virus (EBV) Categories:
1 - Negative
2 - Positive
7 - Not tested
9 - Unknown

1666
Epstein-Barr Virus (EBV) - If positive (2) Epstein-Barr Nuclear Antigen (EBNA) Categories:
1 - Negative
2 - Positive
7 - Not tested
9 - Unknown

1667
Epstein-Barr Virus (EBV) - Viral Capsid Antigen (VCA) Categories:
1 - Negative
2 - Positive
7 - Not tested
9 - Unknown

1668
Epstein-Barr Virus (EBV) - Early Antigen (EA) Categories:
1 - Negative
2 - Positive
7 - Not tested
9 - Unknown

1669
Epstein-Barr Virus (EBV) - Other Categories:
1 - Negative
2 - Positive
7 - Not tested
9 - Unknown
If Other, then can be additionally specified in a separate field

1670
Epstein-Barr Virus (EBV) - Other Text

6. Crossmatch results (2 variables)

Select ID Name Description

1671
Was a pre-transplant crossmatch test performed? Categories:
1 - No
2 - Yes

1672
Were all crossmatch test results negative? Categories:
1 - No
2 - Yes

7. Operative details (16 variables)

Select ID Name Description

1673
Final islet assessment pre-transplant (Enter islet isolation centre product release data for any parameter not reassessed) - Date / time islet arrived at transplant centre Format: DD/MM/YYYY at HH:MM

1674
Final islet assessment pre-transplant (Enter islet isolation centre product release data for any parameter not reassessed) - Date / time infusion commenced Format: DD/MM/YYYY at HH:MM

1675
Final islet assessment pre-transplant (Enter islet isolation centre product release data for any parameter not reassessed) - Date / time infusion completed Format: DD/MM/YYYY at HH:MM

1676
Final islet assessment pre-transplant (Enter islet isolation centre product release data for any parameter not reassessed) - Percentage of islets successfully infused (units: %) Format: string up to 2 characters

1677
Final islet assessment pre-transplant (Enter islet isolation centre product release data for any parameter not reassessed) - Portal venous pressure post-infusion (units: mmHg) Format: string up to 2 characters

1678
Isolation assessment at transplant - Islet yield (units: x1000 IEQ) Format: string up to 3 characters

1679
Isolation assessment at transplant - Islet viability (units: %) Format: string up to 2 characters

1680
Isolation assessment at transplant - Islet purity (units: %) Format: string up to 2 characters

1681
Isolation assessment at transplant - Packed cell volume (units: mls) Format: string up to 3 characters

1682
Isolation assessment at transplant - Endotoxin concentration (units: EU/mg) Format: string up to 3 characters

1683
Surgical complications - Portal vein thrombosis Categories:
1 - No
2 - Yes

1684
Surgical complications - Portal vein / hepatic haemorrhage Categories:
1 - No
2 - Yes

1685
Surgical complications - Gall bladder perforation Categories:
1 - No
2 - Yes

1686
Surgical complications - Peritonitis Categories:
1 - No
2 - Yes

1687
Surgical complications - Other Categories:
1 - No
2 - Yes
If Other, then can be additionally specified in a separate field

1688
Surgical complications - Other Text

8. Post-operative details (21 variables)

Select ID Name Description

1689
Intended primary immunosuppressive regime - Ciclosporin Categories:
1 - No
2 - Yes
9 - Unknown

1690
Intended primary immunosuppressive regime - Tacrolimus Categories:
1 - No
2 - Yes
9 - Unknown

1691
Intended primary immunosuppressive regime - Azathioprine Categories:
1 - No
2 - Yes
9 - Unknown

1692
Intended primary immunosuppressive regime - Mycophenolate Categories:
1 - No
2 - Yes
9 - Unknown

1693
Intended primary immunosuppressive regime - Sirolimus / Everolimus Categories:
1 - No
2 - Yes
9 - Unknown

1694
Intended primary immunosuppressive regime - Prednisolone / Prednisone Categories:
1 - No
2 - Yes
9 - Unknown

1695
Intended primary immunosuppressive regime - Other immunosuppressive agent Categories:
1 - No
2 - Yes
9 - Unknown
If Other immunosuppressive agent, then can be additionally specified in a separate field

1696
Intended primary immunosuppressive regime - Other immunosuppressive agent Text

1697
Intended "induction" agents - Anti - TNF Categories:
1 - No
2 - Yes
9 - Unknown

1698
Intended "induction" agents - ALG / ATG Categories:
1 - No
2 - Yes
9 - Unknown

1699
Intended "induction" agents - OKT3 Categories:
1 - No
2 - Yes
9 - Unknown

1700
Intended "induction" agents - Anti - CD25 monoclonal antibody Categories:
1 - No
2 - Yes
9 - Unknown

1701
Intended "induction" agents - Campath 1H Categories:
1 - No
2 - Yes
9 - Unknown

1702
Intended "induction" agents - Other antibody or induction Categories:
1 - No
2 - Yes
9 - Unknown
If Other antibody or induction agent, then can be additionally specified in a separate field

1703
Intended "induction" agents - Other antibody or induction Text

1704
Did the recipient die within 24 hours of transplant? Categories:
1 - No
2 - Yes

1705
Date of death Format: DD/MM/YYYY

1706
Cause of death - Primary Categories:
11 - Cardiothoracic - Myocardial ischaemia and infarction
12 - Cardiothoracic - Hyperkalaemia
13 - Cardiothoracic - Haemorrhagic pericarditis
15 - Cardiothoracic - Sudden unexplained cardiac death
16 - Cardiothoracic - Hypertensive cardiac failure
17 - Cardiothoracic - Hypokalaemia
18 - Cardiothoracic - Fluid overload
19 - Cardiothoracic - Elevated PVR/Pulmonary hypertension
20 - Cardiothoracic - Airway dehiscence
75 - Cardiothoracic - Early graft dysfunction
76 - Cardiothoracic - Cardiac tamponade
14 - Cardiothoracic - Other causes of cardiac failure
77 - Cardiothoracic - ARDS
78 - Cardiothoracic - Respiratory failure
21 - Vascular - Pulmonary embolus
22 - Vascular - Cerebro-vascular accident
24 - Vascular - Haemorrhage from graft site
25 - Vascular - Haemorrhage from vascular access or dialysis circuit
26 - Vascular - Haemorrhage from ruptured vascular aneurysm (not Code 22 or 23)
27 - Vascular - Haemorrhage from surgery (not Codes 23, 24 or 26)
28 - Vascular - Other haemorrhage (not Codes 23-27)
30 - Infection - Pulmonary infection (protozoal)
31 - Infection - Pulmonary infection (bacterial)
32 - Infection - Pulmonary infection (viral)
33 - Infection - Pulmonary infection (fungal)
34 - Infection - Infections elsewhere (except viral hepatitis see Code 41 and 42)
35 - Infection - Septicaemia
36 - Infection - Tuberculosis (lung)
37 - Infection - Tuberculosis (elsewhere)
38 - Infection - Generalized viral infection
39 - Infection - Peritonitis (not Code 70)
41 - Liver disease - Liver, due to hepatitis B virus
42 - Liver disease - Liver, other viral hepatitis
43 - Liver disease - Liver, drug toxicity
44 - Liver disease - Cirrhosis, not viral
45 - Liver disease - Cystic liver disease
46 - Liver disease - Liver failure, cause unknown
23 - Gastro-intestinal - Gastro-intestinal haemorrhage
29 - Gastro-intestinal - Mesenteric infarction
62 - Gastro-intestinal - Pancreatitis
70 - Gastro-intestinal - Sclerosing (or adhesive) peritoneal disease
71 - Gastro-intestinal - Perforation of peptic ulcer
72 - Gastro-intestinal - Perforation of colon
51 - Social - Patient refused further treatment
52 - Social - Suicide
53 - Social - Therapy ceased for any other reason
47 - Miscellaneous - Renal failure
48 - Miscellaneous - Recurrent primary disease, benign
49 - Miscellaneous - Recurrent primary disease, malignant
61 - Miscellaneous - Uraemia caused by graft failure
63 - Miscellaneous - Bone marrow depression
64 - Miscellaneous - Cachexia
66 - Miscellaneous - Lymphoid malignant disease possibly induced by immunosuppressive therapy
67 - Miscellaneous - Lymphoid malignant disease not induced by immunosuppressive therapy
69 - Miscellaneous - Dementia
73 - Miscellaneous - Non-lymphoid malignant disease possibly induced by immunosuppressive therapy
74 - Miscellaneous - Non-lymphoid malignant disease not induced by immunosuppressive therapy
79 - Miscellaneous - Multi-system failure
81 - Accident - Accident related to treatment
82 - Accident - Accident unrelated to treatment
90 - Donor organ failure
98 - Other identified cause of death
99 - Unknown
If "Cause of death" code is Other identified cause of death (98), then can be additionally specified in a separate field

1707
Cause of death - Primary - Other identified cause of death Text

1708
Cause of death - Secondary Categories:
11 - Cardiothoracic - Myocardial ischaemia and infarction
12 - Cardiothoracic - Hyperkalaemia
13 - Cardiothoracic - Haemorrhagic pericarditis
15 - Cardiothoracic - Sudden unexplained cardiac death
16 - Cardiothoracic - Hypertensive cardiac failure
17 - Cardiothoracic - Hypokalaemia
18 - Cardiothoracic - Fluid overload
19 - Cardiothoracic - Elevated PVR/Pulmonary hypertension
20 - Cardiothoracic - Airway dehiscence
75 - Cardiothoracic - Early graft dysfunction
76 - Cardiothoracic - Cardiac tamponade
14 - Cardiothoracic - Other causes of cardiac failure
77 - Cardiothoracic - ARDS
78 - Cardiothoracic - Respiratory failure
21 - Vascular - Pulmonary embolus
22 - Vascular - Cerebro-vascular accident
24 - Vascular - Haemorrhage from graft site
25 - Vascular - Haemorrhage from vascular access or dialysis circuit
26 - Vascular - Haemorrhage from ruptured vascular aneurysm (not Code 22 or 23)
27 - Vascular - Haemorrhage from surgery (not Codes 23, 24 or 26)
28 - Vascular - Other haemorrhage (not Codes 23-27)
30 - Infection - Pulmonary infection (protozoal)
31 - Infection - Pulmonary infection (bacterial)
32 - Infection - Pulmonary infection (viral)
33 - Infection - Pulmonary infection (fungal)
34 - Infection - Infections elsewhere (except viral hepatitis see Code 41 and 42)
35 - Infection - Septicaemia
36 - Infection - Tuberculosis (lung)
37 - Infection - Tuberculosis (elsewhere)
38 - Infection - Generalized viral infection
39 - Infection - Peritonitis (not Code 70)
41 - Liver disease - Liver, due to hepatitis B virus
42 - Liver disease - Liver, other viral hepatitis
43 - Liver disease - Liver, drug toxicity
44 - Liver disease - Cirrhosis, not viral
45 - Liver disease - Cystic liver disease
46 - Liver disease - Liver failure, cause unknown
23 - Gastro-intestinal - Gastro-intestinal haemorrhage
29 - Gastro-intestinal - Mesenteric infarction
62 - Gastro-intestinal - Pancreatitis
70 - Gastro-intestinal - Sclerosing (or adhesive) peritoneal disease
71 - Gastro-intestinal - Perforation of peptic ulcer
72 - Gastro-intestinal - Perforation of colon
51 - Social - Patient refused further treatment
52 - Social - Suicide
53 - Social - Therapy ceased for any other reason
47 - Miscellaneous - Renal failure
48 - Miscellaneous - Recurrent primary disease, benign
49 - Miscellaneous - Recurrent primary disease, malignant
61 - Miscellaneous - Uraemia caused by graft failure
63 - Miscellaneous - Bone marrow depression
64 - Miscellaneous - Cachexia
66 - Miscellaneous - Lymphoid malignant disease possibly induced by immunosuppressive therapy
67 - Miscellaneous - Lymphoid malignant disease not induced by immunosuppressive therapy
69 - Miscellaneous - Dementia
73 - Miscellaneous - Non-lymphoid malignant disease possibly induced by immunosuppressive therapy
74 - Miscellaneous - Non-lymphoid malignant disease not induced by immunosuppressive therapy
79 - Miscellaneous - Multi-system failure
81 - Accident - Accident related to treatment
82 - Accident - Accident unrelated to treatment
90 - Donor organ failure
98 - Other identified cause of death
99 - Unknown
If "Cause of death" code is Other identified cause of death (98), then can be additionally specified in a separate field

1709
Cause of death - Secondary - Other identified cause of death Text

9. Pancreatic Islet Transplant - 3 months follow-up (128 variables)

Select ID Name Description

1710
Recipient Details - Follow-up Centre Text

1711
Recipient Details - Centre code Format: string up to 6 characters

1712
Recipient Details - ODT Recipient number Format: string up to 6 characters

1713
Recipient Details - ODT Transplant ID Format: string up to 6 characters

1714
Recipient Details - Hospital number Text

1715
Transfer and non-attendance - The patient has transferred to another unit for follow-up Categories:
1 - If yes, please supply full details of unit now caring for this patient in the box below. Please include date of last contact with the patient.
2 - If you are able to make a final follow-up return, please complete and return this form.

1716
Transfer and non-attendance - The patient has not attended for this follow-up but is expected to attend for future follow-up. Complete section 7 and return this form Categories:
1 - No
2 - Yes

1717
Transfer and non-attendance - The patient is considered lost to follow-up. Further contact with the patient is not expected Categories:
1 - Please supply the reason for loss to all further follow-up in the box below
2 - Please include the date of the last contact with the patient
3 - If you are able to make a final follow-up return please complete and return this form

1718
Transfer and non-attendance - Follow-up details - Further details Text

1719
Transfer and non-attendance - Follow-up details - Date of last contact with the patient (If exact date cannot be established a partial date, for example month and year will be accepted) Format: DD/MM/YYYY

1720
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Initial graft function Categories:
1 - Immediate function
2 - Partial function (insulin required)
3 - Primary non-function

1721
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Days ventilated Format: string up to 2 characters

1722
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Days in ITU Format: string up to 3 characters

1723
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Has recipient been discharged from hospital? Categories:
1 - No
2 - Yes
If YES, date of initial discharge following this transplant can be specified

1724
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Date of initial discharge Format: DD/MM/YYYY

1725
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Diabetic complications (Please indicate complications that have occurred in the first 3 months post-transplant) - Number of severe hypoglycaemia events Format: string up to 2 characters

1726
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Diabetic complications (Please indicate complications that have occurred in the first 3 months post-transplant) - If one or more, date of first event Format: DD/MM/YYYY

1727
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Diabetic complications (Please indicate complications that have occurred in the first 3 months post-transplant) - Number of admissions with diabetic ketoacidosis Format: string up to 2 characters

1728
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Diabetic complications (Please indicate complications that have occurred in the first 3 months post-transplant) - If one or more, date of first admission Format: DD/MM/YYYY

1729
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Diabetic complications (Please indicate complications that have occurred in the first 3 months post-transplant) - Angina Categories:
1 - No
2 - Yes

1730
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Diabetic complications (Please indicate complications that have occurred in the first 3 months post-transplant) - Myocardial infarction Categories:
1 - No
2 - Yes

1731
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Diabetic complications (Please indicate complications that have occurred in the first 3 months post-transplant) - PCI Categories:
1 - No
2 - Yes
3 - Stent

1732
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Diabetic complications (Please indicate complications that have occurred in the first 3 months post-transplant) - Coronary artery bypass graft Categories:
1 - No
2 - Yes

1733
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Diabetic complications (Please indicate complications that have occurred in the first 3 months post-transplant) - Transient ischemic attack Categories:
1 - No
2 - Yes

1734
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Diabetic complications (Please indicate complications that have occurred in the first 3 months post-transplant) - CVA Categories:
1 - No
2 - Yes

1735
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Diabetic complications (Please indicate complications that have occurred in the first 3 months post-transplant) - Intermittent claudication Categories:
1 - No
2 - Yes

1736
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Diabetic complications (Please indicate complications that have occurred in the first 3 months post-transplant) - PVD intervention Categories:
1 - None
2 - Angioplasty
3 - Bypass graft

1737
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Diabetic complications (Please indicate complications that have occurred in the first 3 months post-transplant) - Foot ulceration Categories:
1 - No
2 - Yes
3 - Current

1738
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Diabetic complications (Please indicate complications that have occurred in the first 3 months post-transplant) - Limb amputation Categories:
1 - No amputation
2 - Major limb amputation
3 - Digital amputation

1739
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Diabetic eye disease - Diabetic retinopathy confirmed by dilated digital photography Categories:
1 - No
2 - Yes

1740
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Diabetic eye disease - Registered blind Categories:
1 - No
2 - Yes - blind
3 - Yes - impaired

1741
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Diabetic eye disease - Laser photocoagulation Categories:
1 - No
2 - Yes

1742
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Diabetic eye disease - Cataract Categories:
1 - No
2 - Yes
3 - Extraction

1743
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Diabetic eye disease - Vitreous haemorrhage Categories:
1 - No
2 - Yes

1744
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Diabetic eye disease - Vitrectomy Categories:
1 - No
2 - Yes

1745
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Nephropathy / neuropathy / musculoskeletal (record current status) - Proteinuria Categories:
1 - No
2 - Microalbuminuria
3 - Macroalbuminuria

1746
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Nephropathy / neuropathy / musculoskeletal (record current status) - Ulceration Categories:
1 - No
2 - Yes

1747
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Nephropathy / neuropathy / musculoskeletal (record current status) - Postural hypotension Categories:
1 - No
2 - Yes

1748
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Nephropathy / neuropathy / musculoskeletal (record current status) - Erectile/sexual dysfunction Categories:
1 - No
2 - Yes

1749
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Nephropathy / neuropathy / musculoskeletal (record current status) - Peripheral neuropathy Categories:
1 - No
2 - Yes

1750
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Nephropathy / neuropathy / musculoskeletal (record current status) - Gastroparesis Categories:
1 - No
2 - Yes

1751
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Nephropathy / neuropathy / musculoskeletal (record current status) - Autonomic sweating Categories:
1 - No
2 - Yes

1752
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Nephropathy / neuropathy / musculoskeletal (record current status) - Charcot foot Categories:
1 - No
2 - Yes

1753
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Nephropathy / neuropathy / musculoskeletal (record current status) - Neuropathic pain score (0-10, 0 = no pain) Format: number

1754
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Nephropathy / neuropathy / musculoskeletal (record current status) - Diabetic enteropathy Categories:
1 - No
2 - Yes

1755
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Nephropathy / neuropathy / musculoskeletal (record current status) - Autonomic bladder dysfunction Categories:
1 - No
2 - Yes

1756
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Nephropathy / neuropathy / musculoskeletal (record current status) - Cheiroarthropathy Categories:
1 - No
2 - Yes

1757
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Nephropathy / neuropathy / musculoskeletal (record current status) - Mononeuropathy Categories:
1 - No
2 - Yes

1758
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Other autoimmune disease - Thyroid disease Categories:
1 - No
2 - Yes

1759
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Other autoimmune disease - Addison`s disease Categories:
1 - No
2 - Yes

1760
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Other autoimmune disease - Coeliac disease Categories:
1 - No
2 - Yes

1761
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Other complications - Has the recipient required readmission due to complications? Categories:
1 - No
2 - Yes
If YES, please indicate the complications present

1762
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Other complications - Portal vein / hepatic haemorrhage Categories:
1 - No
2 - Yes

1763
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Other complications - Portal vein thrombosis Categories:
1 - No
2 - Yes

1764
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Other complications - Perforated gall bladder Categories:
1 - No
2 - Yes

1765
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Other complications - CMV infection Categories:
1 - No
2 - Yes

1766
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Other complications - Viral systemic infection Categories:
1 - No
2 - Yes

1767
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Other complications - Other Categories:
1 - No
2 - Yes

1768
Post-operative course to 3 months (or graft failure if earlier than 3 months) Other complications - Urinary tract infection (UTI) - Other Categories:
1 - No
2 - Yes

1769
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Other complications - Bacterial systemic infection Categories:
1 - No
2 - Yes

1770
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Other complications - Intraperitoneal abscess Categories:
1 - No
2 - Yes

1771
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Other complications - Fungal systemic infection Categories:
1 - No
2 - Yes

1772
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Other complications - Number of laparotomies performed since transplant? (No laparotomies = 0) Format: number

1773
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Other complications - Futher details of above complications Text

1774
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Rejection - Number of treated islet rejection episodes in the first3 months post-transplant (No rejection = 0) Format: number

1775
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Rejection - If one or more, date of first episode Format: DD/MM/YYYY

1776
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Rejection - Were any rejection episodes treated following a protocol biopsy? Categories:
1 - No
2 - Yes

1777
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Employment status (`Replace `work` with `study` for recipients in full time education) Categories:
11 - Working - full time
12 - Able to work - chooses not to
13 - Able to work - unable to find work
14 - Working part time - by choice
15 - Working part time - due to disease
16 - Unable to work - due to disease
17 - Hospitalised
18 - Other
19 - Unknown
If code 18 (Other), then can be additionally specified in a separate field

1778
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Employment status (`Replace `work` with `study` for recipients in full time education) - Other Text

1779
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Has this recipient developed evidence of a primary or recurrent disease in the islet graft during the first 3 months post-transplant? Categories:
1 - No
2 - Yes

1780
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Malignancy details - Has the recipient developed post-transplant lymphoproliferative disease (PTLD) or lymphoma in the first 3 months post-transplant? Categories:
1 - No
2 - Yes

1781
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Malignancy details - Has the recipient developed a malignancy in the first 3 months post-transplant (excluding PTLD, lymphoma and cervical dysplasia)? Categories:
1 - No
2 - Yes
If YES futher details will be provided

1782
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Malignancy details - Type of malignancy (malignancy #1) Format: Text

1783
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Malignancy details - ICD10 code (malignancy #1) Format: string up to 4 characters

1784
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Malignancy details - Date first diagnosed (malignancy #1) Format: DD/MM/YYYY

1785
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Malignancy details - Could the malignancy be of donor origin? (malignancy #1) Categories:
1 - No evidence
2 - Yes - very likely
3 - Yes - possibly

1786
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Malignancy details - Type of malignancy (malignancy #2) Format: Text

1787
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Malignancy details - ICD10 code (malignancy #2) Format: string up to 4 characters

1788
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Malignancy details - Date first diagnosed (malignancy #2) Format: DD/MM/YYYY

1789
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Malignancy details - Could the malignancy be of donor origin? (malignancy #2) Categories:
1 - No evidence
2 - Yes - very likely
3 - Yes - possibly

1790
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Malignancy details - Type of malignancy (malignancy #3) Format: Text

1791
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Malignancy details - ICD10 code (malignancy #3) Format: string up to 4 characters

1792
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Malignancy details - Date first diagnosed (malignancy #3) Format: DD/MM/YYYY

1793
Post-operative course to 3 months (or graft failure if earlier than 3 months) - Malignancy details - Could the malignancy be of donor origin? (malignancy #3) Categories:
1 - No evidence
2 - Yes - very likely
3 - Yes - possibly

1794
Graft and recipient status - Has the pancreatic islet graft failed? (C-peptide<50pmol/l) (Recipient died with a functioning graft, please record as failed with reason 90, death with functioning graft) Categories:
1 - No
2 - Yes
If YES futher details will be provided

1795
Graft and recipient status - Date of failure (date C-peptide recorded below 50pmol/l) Format: DD/MM/YYYY

1796
Graft and recipient status - Cause of failure Categories:
1 - Vascular thrombosis
2 - Infection
3 - Bleeding
6 - Primary non-function (no detectable C-peptide between 7 and 28 days)
7 - Patient declined medication
8 - Hyperacute rejection
9 - Acute rejection
10 - Chronic rejection
11 - Preservation / Procurement problem
12 - Instant blood mediated inflammatory reaction (IBMIR)
13 - Poor engraftment 14 - Functional decline (unknown cause)
15 - Recurrent autoimmunity
16 - Hepatitis / Steatosis
17 - Cholangitis
90 - Death with a functioning graft
98 - Other
99 - Unknown
If "Cause of failure" code is Other identified cause of death (98), then can be additionally specified in a separate field

1797
Graft and recipient status - Other identified cause of failure Text

1798
Graft and recipient status - Has the recipient died? Categories:
1 - No
2 - Yes
If YES futher details will be provided

1799
Graft and recipient status - Date of death Format: DD/MM/YYYY

1800
Graft and recipient status - Cause of death - Primary Categories:
11 - Cardiothoracic - Myocardial ischaemia and infarction
12 - Cardiothoracic - Hyperkalaemia
13 - Cardiothoracic - Haemorrhagic pericarditis
15 - Cardiothoracic - Sudden unexplained cardiac death
16 - Cardiothoracic - Hypertensive cardiac failure
17 - Cardiothoracic - Hypokalaemia
18 - Cardiothoracic - Fluid overload
19 - Cardiothoracic - Elevated PVR/Pulmonary hypertension
20 - Cardiothoracic - Airway dehiscence
75 - Cardiothoracic - Early graft dysfunction
76 - Cardiothoracic - Cardiac tamponade
14 - Cardiothoracic - Other causes of cardiac failure
77 - Cardiothoracic - ARDS
78 - Cardiothoracic - Respiratory failure
21 - Vascular - Pulmonary embolus
22 - Vascular - Cerebro-vascular accident
24 - Vascular - Haemorrhage from graft site
25 - Vascular - Haemorrhage from vascular access or dialysis circuit
26 - Vascular - Haemorrhage from ruptured vascular aneurysm (not Code 22 or 23)
27 - Vascular - Haemorrhage from surgery (not Codes 23, 24 or 26)
28 - Vascular - Other haemorrhage (not Codes 23-27)
30 - Infection - Pulmonary infection (protozoal)
31 - Infection - Pulmonary infection (bacterial)
32 - Infection - Pulmonary infection (viral)
33 - Infection - Pulmonary infection (fungal)
34 - Infection - Infections elsewhere (except viral hepatitis see Code 41 and 42)
35 - Infection - Septicaemia
36 - Infection - Tuberculosis (lung)
37 - Infection - Tuberculosis (elsewhere)
38 - Infection - Generalized viral infection
39 - Infection - Peritonitis (not Code 70)
41 - Liver disease - Liver, due to hepatitis B virus
42 - Liver disease - Liver, other viral hepatitis
43 - Liver disease - Liver, drug toxicity
44 - Liver disease - Cirrhosis, not viral
45 - Liver disease - Cystic liver disease
46 - Liver disease - Liver failure, cause unknown
23 - Gastro-intestinal - Gastro-intestinal haemorrhage
29 - Gastro-intestinal - Mesenteric infarction
62 - Gastro-intestinal - Pancreatitis
70 - Gastro-intestinal - Sclerosing (or adhesive) peritoneal disease
71 - Gastro-intestinal - Perforation of peptic ulcer
72 - Gastro-intestinal - Perforation of colon
51 - Social - Patient refused further treatment
52 - Social - Suicide
53 - Social - Therapy ceased for any other reason
47 - Miscellaneous - Renal failure
48 - Miscellaneous - Recurrent primary disease, benign
49 - Miscellaneous - Recurrent primary disease, malignant
61 - Miscellaneous - Uraemia caused by graft failure
63 - Miscellaneous - Bone marrow depression
64 - Miscellaneous - Cachexia
66 - Miscellaneous - Lymphoid malignant disease possibly induced by immunosuppressive therapy
67 - Miscellaneous - Lymphoid malignant disease not induced by immunosuppressive therapy
69 - Miscellaneous - Dementia
73 - Miscellaneous - Non-lymphoid malignant disease possibly induced by immunosuppressive therapy
74 - Miscellaneous - Non-lymphoid malignant disease not induced by immunosuppressive therapy
79 - Miscellaneous - Multi-system failure
81 - Accident - Accident related to treatment
82 - Accident - Accident unrelated to treatment
90 - Donor organ failure
98 - Other identified cause of death
99 - Unknown
If "Cause of death" code is Other identified cause of death (98), then can be additionally specified in a separate field

1801
Graft and recipient status - Cause of death - Primary - Other identified cause of death Text

1802
Graft and recipient status - Cause of death - Secondary Categories:
11 - Cardiothoracic - Myocardial ischaemia and infarction
12 - Cardiothoracic - Hyperkalaemia
13 - Cardiothoracic - Haemorrhagic pericarditis
15 - Cardiothoracic - Sudden unexplained cardiac death
16 - Cardiothoracic - Hypertensive cardiac failure
17 - Cardiothoracic - Hypokalaemia
18 - Cardiothoracic - Fluid overload
19 - Cardiothoracic - Elevated PVR/Pulmonary hypertension
20 - Cardiothoracic - Airway dehiscence
75 - Cardiothoracic - Early graft dysfunction
76 - Cardiothoracic - Cardiac tamponade
14 - Cardiothoracic - Other causes of cardiac failure
77 - Cardiothoracic - ARDS
78 - Cardiothoracic - Respiratory failure
21 - Vascular - Pulmonary embolus
22 - Vascular - Cerebro-vascular accident
24 - Vascular - Haemorrhage from graft site
25 - Vascular - Haemorrhage from vascular access or dialysis circuit
26 - Vascular - Haemorrhage from ruptured vascular aneurysm (not Code 22 or 23)
27 - Vascular - Haemorrhage from surgery (not Codes 23, 24 or 26)
28 - Vascular - Other haemorrhage (not Codes 23-27)
30 - Infection - Pulmonary infection (protozoal)
31 - Infection - Pulmonary infection (bacterial)
32 - Infection - Pulmonary infection (viral)
33 - Infection - Pulmonary infection (fungal)
34 - Infection - Infections elsewhere (except viral hepatitis see Code 41 and 42)
35 - Infection - Septicaemia
36 - Infection - Tuberculosis (lung)
37 - Infection - Tuberculosis (elsewhere)
38 - Infection - Generalized viral infection
39 - Infection - Peritonitis (not Code 70)
41 - Liver disease - Liver, due to hepatitis B virus
42 - Liver disease - Liver, other viral hepatitis
43 - Liver disease - Liver, drug toxicity
44 - Liver disease - Cirrhosis, not viral
45 - Liver disease - Cystic liver disease
46 - Liver disease - Liver failure, cause unknown
23 - Gastro-intestinal - Gastro-intestinal haemorrhage
29 - Gastro-intestinal - Mesenteric infarction
62 - Gastro-intestinal - Pancreatitis
70 - Gastro-intestinal - Sclerosing (or adhesive) peritoneal disease
71 - Gastro-intestinal - Perforation of peptic ulcer
72 - Gastro-intestinal - Perforation of colon
51 - Social - Patient refused further treatment
52 - Social - Suicide
53 - Social - Therapy ceased for any other reason
47 - Miscellaneous - Renal failure
48 - Miscellaneous - Recurrent primary disease, benign
49 - Miscellaneous - Recurrent primary disease, malignant
61 - Miscellaneous - Uraemia caused by graft failure
63 - Miscellaneous - Bone marrow depression
64 - Miscellaneous - Cachexia
66 - Miscellaneous - Lymphoid malignant disease possibly induced by immunosuppressive therapy
67 - Miscellaneous - Lymphoid malignant disease not induced by immunosuppressive therapy
69 - Miscellaneous - Dementia
73 - Miscellaneous - Non-lymphoid malignant disease possibly induced by immunosuppressive therapy
74 - Miscellaneous - Non-lymphoid malignant disease not induced by immunosuppressive therapy
79 - Miscellaneous - Multi-system failure
81 - Accident - Accident related to treatment
82 - Accident - Accident unrelated to treatment
90 - Donor organ failure
98 - Other identified cause of death
99 - Unknown
If "Cause of death" code is Other identified cause of death (98), then can be additionally specified in a separate field

1803
Graft and recipient status - Cause of death - Secondary - Other identified cause of death Text

1804
Clinical assessment - Date of clinical assessment of functioning graft (For grafts still functioning, please report an assessment undertaken no earlier than 10 weeks post-transplant) Format: DD/MM/YYYY

1805
Clinical assessment - Has the recipient been insulin independent at all since transplant? Categories:
1 - No
2 - Yes

1806
Clinical assessment - Current graft function Categories:
1 - Insulin independent
2 - Partial function
3 - No function

1807
Clinical assessment - IFCC-HbA1c (units: mmol/mol) Format: string up to 3 characters

1808
Clinical assessment - Date insulin ceased (If currently insulin independent) Format: DD/MM/YYYY

1809
Clinical assessment - Current insulin dose (If currently partial or no function) (units: unit/24hr) Format: string up to 3 characters

1810
Clinical assessment - Date insulin resumed (If previously insulin independent at any time since transplant) Format: DD/MM/YYYY

1811
Clinical assessment - Glucose lowering drug (For combination treatment only, please enter Drug 1 and Drug 2) - Drug 1 Categories:
0 - None
1 - Metformin
2 - Pioglitazone
3 - Rosi
4 - GLP1
5 - SU
6 - DPPIV
7 - Other

1812
Clinical assessment - Glucose lowering drug (For combination treatment only, please enter Drug 1 and Drug 2) - Drug 2 Categories:
0 - None
1 - Metformin
2 - Pioglitazone
3 - Rosi
4 - GLP1
5 - SU
6 - DPPIV
7 - Other

1813
Clinical assessment - C-peptide measured between 10 and 14 weeks post-transplant (units: pmol/l) Format: string up to 4 characters

1814
Clinical assessment - C-peptide measured between 10 and 14 weeks post-transplant - Measured on Format: DD/MM/YYYY

1815
Clinical assessment - Serum creatinine measured between 10 and 14 weeks post-transplant (units: umol/l, micro-mole per litre) Format: string up to 4 characters

1816
Clinical assessment - Serum creatinine measured between 10 and 14 weeks post-transplant - Measured on Format: DD/MM/YYYY

1817
Clinical assessment - Date of Meal Tolerance Test Format: DD/MM/YYYY

1818
Clinical assessment - Fasting glucose (units: mmol/l) Format: string up to 3 characters

1819
Clinical assessment - 90-minute glucose (units: mmol/l) Format: string up to 3 characters

1820
Clinical assessment - Fasting C-peptide (units: pmol/l) Format: string up to 4 characters

1821
Clinical assessment - 90-minute C-peptide (units: pmol/l) Format: string up to 4 characters

1822
Clinical assessment - Recipient weight at time of assessment (units: kg) Format: string up to 4 characters

1823
Clinical assessment - Current immunosuppressive drugs at date of assessment (Prior to graft failure for failed grafts, prior to death for deaths with a functioning graft) - Ciclosporin Categories:
1 - No
2 - Yes
9 - Unknown
If YES futher details will be provided

1824
Clinical assessment - Current immunosuppressive drugs at date of assessment (Prior to graft failure for failed grafts, prior to death for deaths with a functioning graft) - Ciclosporin (If administered) (units: mg/day) Format: string up to 5 characters

1825
Clinical assessment - Current immunosuppressive drugs at date of assessment (Prior to graft failure for failed grafts, prior to death for deaths with a functioning graft) - Tacrolimus Categories:
1 - No
2 - Yes
9 - Unknown
If YES futher details will be provided

1826
Clinical assessment - Current immunosuppressive drugs at date of assessment (Prior to graft failure for failed grafts, prior to death for deaths with a functioning graft) - Tacrolimus (If administered) (units: mg/day) Format: string up to 5 characters

1827
Clinical assessment - Current immunosuppressive drugs at date of assessment (Prior to graft failure for failed grafts, prior to death for deaths with a functioning graft) - Azathioprine Categories:
1 - No
2 - Yes
9 - Unknown
If YES futher details will be provided

1828
Clinical assessment - Current immunosuppressive drugs at date of assessment (Prior to graft failure for failed grafts, prior to death for deaths with a functioning graft) - Azathioprine (If administered) (units: mg/day) Format: string up to 5 characters

1829
Clinical assessment - Current immunosuppressive drugs at date of assessment (Prior to graft failure for failed grafts, prior to death for deaths with a functioning graft) - Mycophenolate Categories:
1 - No
2 - Yes
9 - Unknown
If YES futher details will be provided

1830
Clinical assessment - Current immunosuppressive drugs at date of assessment (Prior to graft failure for failed grafts, prior to death for deaths with a functioning graft) - Mycophenolate (If administered) (units: mg/day) Format: string up to 5 characters

1831
Clinical assessment - Current immunosuppressive drugs at date of assessment (Prior to graft failure for failed grafts, prior to death for deaths with a functioning graft) - Sirolimus/Everolimus Categories:
1 - No
2 - Yes
9 - Unknown
If YES futher details will be provided

1832
Clinical assessment - Current immunosuppressive drugs at date of assessment (Prior to graft failure for failed grafts, prior to death for deaths with a functioning graft) - Sirolimus/Everolimus (If administered) (units: mg/day) Format: string up to 5 characters

1833
Clinical assessment - Current immunosuppressive drugs at date of assessment (Prior to graft failure for failed grafts, prior to death for deaths with a functioning graft) - Prednisolone/Prednisone Categories:
1 - No
2 - Yes
9 - Unknown
If YES futher details will be provided

1834
Clinical assessment - Current immunosuppressive drugs at date of assessment (Prior to graft failure for failed grafts, prior to death for deaths with a functioning graft) - Prednisolone/Prednisone (If administered) (units: mg/day) Format: string up to 5 characters

1835
Clinical assessment - Current immunosuppressive drugs at date of assessment (Prior to graft failure for failed grafts, prior to death for deaths with a functioning graft) - Other Categories:
1 - No
2 - Yes
9 - Unknown
If YES futher details will be provided

1836
Clinical assessment - Current immunosuppressive drugs at date of assessment (Prior to graft failure for failed grafts, prior to death for deaths with a functioning graft) - Other (If administered) (units: mg/day) Format: string up to 5 characters

1837
Clinical assessment - Current immunosuppressive drugs at date of assessment (Prior to graft failure for failed grafts, prior to death for deaths with a functioning graft) - Other (If administered) Text

10. Pancreatic Islet Transplant - 6 months follow-up (128 variables)

Select ID Name Description

1838
Recipient Details - Follow-up Centre Text

1839
Recipient Details - Centre code Format: string up to 6 characters

1840
Recipient Details - ODT Recipient number Format: string up to 6 characters

1841
Recipient Details - ODT Transplant ID Format: string up to 6 characters

1842
Recipient Details - Hospital number Text

1843
Transfer and non-attendance - The patient has transferred to another unit for follow-up Categories:
1 - If yes, please supply full details of unit now caring for this patient in the box below. Please include date of last contact with the patient.
2 - If you are able to make a final follow-up return, please complete and return this form.

1844
Transfer and non-attendance - The patient has not attended for this follow-up but is expected to attend for future follow-up. Complete section 7 and return this form Categories:
1 - No
2 - Yes

1845
Transfer and non-attendance - The patient is considered lost to follow-up. Further contact with the patient is not expected Categories:
1 - Please supply the reason for loss to all further follow-up in the box below
2 - Please include the date of the last contact with the patient
3 - If you are able to make a final follow-up return please complete and return this form

1846
Transfer and non-attendance - Follow-up details - Further details Text

1847
Transfer and non-attendance - Follow-up details - Date of last contact with the patient (If exact date cannot be established a partial date, for example month and year will be accepted) Format: DD/MM/YYYY

1848
Post-operative course to 6 months (or graft failure if earlier than 6 months) - Initial graft function Categories:
1 - Immediate function
2 - Partial function (insulin required)
3 - Primary non-function

1849
Post-operative course to 6 months (or graft failure if earlier than 6 months) - Days ventilated Format: string up to 2 characters

1850
Post-operative course to 6 months (or graft failure if earlier than 6 months) - Days in ITU Format: string up to 3 characters

1851
Post-operative course to 6 months (or graft failure if earlier than 6 months) - Has recipient been discharged from hospital? Categories:
1 - No
2 - Yes
If YES, date of initial discharge following this transplant can be specified

1852
Post-operative course to 6 months (or graft failure if earlier than 6 months) - Date of initial discharge Format: DD/MM/YYYY

1853
Post-operative course to 6 months (or graft failure if earlier than 6 months) - Diabetic complications (Please indicate complications that have occurred in the first 6 months post-transplant) - Number of severe hypoglycaemia events Format: string up to 2 characters

1854
Post-operative course to 6 months (or graft failure if earlier than 6 months) - Diabetic complications (Please indicate complications that have occurred in the first 6 months post-transplant) - If one or more, date of first event Format: DD/MM/YYYY

1855
Post-operative course to 6 months (or graft failure if earlier than 6 months) - Diabetic complications (Please indicate complications that have occurred in the first 6 months post-transplant) - Number of admissions with diabetic ketoacidosis Format: string up to 2 characters

1856
Post-operative course to 6 months (or graft failure if earlier than 6 months) - Diabetic complications (Please indicate complications that have occurred in the first 6 months post-transplant) - If one or more, date of first admission Format: DD/MM/YYYY

1857
Post-operative course to 6 months (or graft failure if earlier than 6 months) - Diabetic complications (Please indicate complications that have occurred in the first 6 months post-transplant) - Angina Categories:
1 - No
2 - Yes

1858
Post-operative course to 6 months (or graft failure if earlier than 6 months) - Diabetic complications (Please indicate complications that have occurred in the first 6 months post-transplant) - Myocardial infarction Categories:
1 - No
2 - Yes

1859
Post-operative course to 6 months (or graft failure if earlier than 6 months) - Diabetic complications (Please indicate complications that have occurred in the first 6 months post-transplant) - PCI Categories:
1 - No
2 - Yes
3 - Stent

1860
Post-operative course to 6 months (or graft failure if earlier than 6 months) - Diabetic complications (Please indicate complications that have occurred in the first 6 months post-transplant) - Coronary artery bypass graft Categories:
1 - No
2 - Yes

1861
Post-operative course to 6 months (or graft failure if earlier than 6 months) - Diabetic complications (Please indicate complications that have occurred in the first 6 months post-transplant) - Transient ischemic attack Categories:
1 - No
2 - Yes

1862
Post-operative course to 6 months (or graft failure if earlier than 6 months) - Diabetic complications (Please indicate complications that have occurred in the first 6 months post-transplant) - CVA Categories:
1 - No
2 - Yes

1863
Post-operative course to 6 months (or graft failure if earlier than 6 months) - Diabetic complications (Please indicate complications that have occurred in the first 6 months post-transplant) - Intermittent claudication Categories:
1 - No
2 - Yes

1864
Post-operative course to 6 months (or graft failure if earlier than 6 months) - Diabetic complications (Please indicate complications that have occurred in the first 6 months post-transplant) - PVD intervention Categories:
1 - None
2 - Angioplasty
3 - Bypass graft

1865
Post-operative course to 6 months (or graft failure if earlier than 6 months) - Diabetic complications (Please indicate complications that have occurred in the first 6 months post-transplant) - Foot ulceration Categories:
1 - No
2 - Yes
3 - Current

1866
Post-operative course to 6 months (or graft failure if earlier than 6 months) - Diabetic complications (Please indicate complications that have occurred in the first 6 months post-transplant) - Limb amputation Categories:
1 - No amputation
2 - Major limb amputation
3 - Digital amputation

1867
Post-operative course to 6 months (or graft failure if earlier than 6 months) - Diabetic eye disease - Diabetic retinopathy confirmed by dilated digital photography Categories:
1 - No
2 - Yes

1868
Post-operative course to 6 months (or graft failure if earlier than 6 months) - Diabetic eye disease - Registered blind Categories:
1 - No
2 - Yes - blind
3 - Yes - impaired

1869
Post-operative course to 6 months (or graft failure if earlier than 6 months) - Diabetic eye disease - Laser photocoagulation Categories:
1 - No
2 - Yes

1870
Post-operative course to 6 months (or graft failure if earlier than 6 months) - Diabetic eye disease - Cataract Categories:
1 - No
2 - Yes
3 - Extraction

1871
Post-operative course to 6 months (or graft failure if earlier than 6 months) - Diabetic eye disease - Vitreous haemorrhage Categories:
1 - No
2 - Yes

1872
Post-operative course to 6 months (or graft failure if earlier than 6 months) - Diabetic eye disease - Vitrectomy Categories:
1 - No
2 - Yes

1873
Post-operative course to 6 months (or graft failure if earlier than 6 months) - Nephropathy / neuropathy / musculoskeletal (record current status) - Proteinuria Categories:
1 - No
2 - Microalbuminuria
3 - Macroalbuminuria

1874
Post-operative course to 6 months (or graft failure if earlier than 6 months) - Nephropathy / neuropathy / musculoskeletal (record current status) - Ulceration Categories:
1 - No
2 - Yes

1875
Post-operative course to 6 months (or graft failure if earlier than 6 months) - Nephropathy / neuropathy / musculoskeletal (record current status) - Postural hypotension Categories:
1 - No
2 - Yes

1876
Post-operative course to 6 months (or graft failure if earlier than 6 months) - Nephropathy / neuropathy / musculoskeletal (record current status) - Erectile/sexual dysfunction Categories:
1 - No
2 - Yes

1877
Post-operative course to 6 months (or graft failure if earlier than 6 months) - Nephropathy / neuropathy / musculoskeletal (record current status) - Peripheral neuropathy Categories:
1 - No
2 - Yes

1878
Post-operative course to 6 months (or graft failure if earlier than 6 months) - Nephropathy / neuropathy / musculoskeletal (record current status) - Gastroparesis Categories:
1 - No
2 - Yes

1879
Post-operative course to 6 months (or graft failure if earlier than 6 months) - Nephropathy / neuropathy / musculoskeletal (record current status) - Autonomic sweating Categories:
1 - No
2 - Yes

1880
Post-operative course to 6 months (or graft failure if earlier than 6 months) - Nephropathy / neuropathy / musculoskeletal (record current status) - Charcot foot Categories:
1 - No
2 - Yes

1881
Post-operative course to 6 months (or graft failure if earlier than 6 months) - Nephropathy / neuropathy / musculoskeletal (record current status) - Neuropathic pain score (0-10, 0 = no pain) Format: number

1882
Post-operative course to 6 months (or graft failure if earlier than 6 months) - Nephropathy / neuropathy / musculoskeletal (record current status) - Diabetic enteropathy Categories:
1 - No
2 - Yes

1883
Post-operative course to 6 months (or graft failure if earlier than 6 months) - Nephropathy / neuropathy / musculoskeletal (record current status) - Autonomic bladder dysfunction Categories:
1 - No
2 - Yes

1884
Post-operative course to 6 months (or graft failure if earlier than 6 months) - Nephropathy / neuropathy / musculoskeletal (record current status) - Cheiroarthropathy Categories:
1 - No
2 - Yes

1885
Post-operative course to 6 months (or graft failure if earlier than 6 months) - Nephropathy / neuropathy / musculoskeletal (record current status) - Mononeuropathy Categories:
1 - No
2 - Yes

1886
Post-operative course to 6 months (or graft failure if earlier than 6 months) - Other autoimmune disease - Thyroid disease Categories:
1 - No
2 - Yes

1887
Post-operative course to 6 months (or graft failure if earlier than 6 months) - Other autoimmune disease - Addison`s disease Categories:
1 - No
2 - Yes

1888
Post-operative course to 6 months (or graft failure if earlier than 6 months) - Other autoimmune disease - Coeliac disease Categories:
1 - No
2 - Yes

1889
Post-operative course to 6 months (or graft failure if earlier than 6 months) - Other complications - Has the recipient required readmission due to complications? Categories:
1 - No
2 - Yes
If YES, please indicate the complications present

1890
Post-operative course to 6 months (or graft failure if earlier than 6 months) - Other complications - Portal vein / hepatic haemorrhage Categories:
1 - No
2 - Yes

1891
Post-operative course to 6 months (or graft failure if earlier than 6 months) - Other complications - Portal vein thrombosis Categories:
1 - No
2 - Yes

1892
Post-operative course to 6 months (or graft failure if earlier than 6 months) - Other complications - Perforated gall bladder Categories:
1 - No
2 - Yes

1893
Post-operative course to 6 months (or graft failure if earlier than 6 months) - Other complications - CMV infection Categories:
1 - No
2 - Yes

1894
Post-operative course to 6 months (or graft failure if earlier than 6 months) - Other complications - Viral systemic infection Categories:
1 - No
2 - Yes

1895
Post-operative course to 6 months (or graft failure if earlier than 6 months) - Other complications - Other Categories:
1 - No
2 - Yes

1896
Post-operative course to 6 months (or graft failure if earlier than 6 months) Other complications - Urinary tract infection (UTI) - Other Categories:
1 - No
2 - Yes

1897
Post-operative course to 6 months (or graft failure if earlier than 6 months) - Other complications - Bacterial systemic infection Categories:
1 - No
2 - Yes

1898
Post-operative course to 6 months (or graft failure if earlier than 6 months) - Other complications - Intraperitoneal abscess Categories:
1 - No
2 - Yes

1899
Post-operative course to 6 months (or graft failure if earlier than 6 months) - Other complications - Fungal systemic infection Categories:
1 - No
2 - Yes

1900
Post-operative course to 6 months (or graft failure if earlier than 6 months) - Other complications - Number of laparotomies performed since transplant? (No laparotomies = 0) Format: number

1901
Post-operative course to 6 months (or graft failure if earlier than 6 months) - Other complications - Futher details of above complications Text

1902
Post-operative course to 6 months (or graft failure if earlier than 6 months) - Rejection - Number of treated islet rejection episodes since this patients 3 month follow-up form was completed? (No rejection = 0) Format: number

1903
Post-operative course to 6 months (or graft failure if earlier than 6 months) - Rejection - If one or more, date of first episode Format: DD/MM/YYYY

1904
Post-operative course to 6 months (or graft failure if earlier than 6 months) - Rejection - Were any rejection episodes treated following a protocol biopsy? Categories:
1 - No
2 - Yes

1905
Post-operative course to 6 months (or graft failure if earlier than 6 months) - Employment status (`Replace `work` with `study` for recipients in full time education) Categories:
11 - Working - full time
12 - Able to work - chooses not to
13 - Able to work - unable to find work
14 - Working part time - by choice
15 - Working part time - due to disease
16 - Unable to work - due to disease
17 - Hospitalised
18 - Other
19 - Unknown
If code 18 (Other), then can be additionally specified in a separate field

1906
Post-operative course to 6 months (or graft failure if earlier than 6 months) - Employment status (`Replace `work` with `study` for recipients in full time education) - Other Text

1907
Post-operative course to 6 months (or graft failure if earlier than 6 months) - Has this recipient developed evidence of a primary or recurrent disease in the islet graft since this patients 3 month follow-up form was completed? Categories:
1 - No
2 - Yes

1908
Post-operative course to 6 months (or graft failure if earlier than 6 months) - Malignancy details - Has the recipient developed post-transplant lymphoproliferative disease (PTLD) or lymphoma since this patients 3 month follow-up form was completed? Categories:
1 - No
2 - Yes

1909
Post-operative course to 6 months (or graft failure if earlier than 6 months) - Malignancy details - Has the recipient developed a malignancy since this patients 3 month follow-up form was completed (excluding PTLD, lymphoma and cervical dysplasia)? Categories:
1 - No
2 - Yes
If YES futher details will be provided

1910
Post-operative course to 6 months (or graft failure if earlier than 6 months) - Malignancy details - Type of malignancy (malignancy #1) Format: Text

1911
Post-operative course to 6 months (or graft failure if earlier than 6 months) - Malignancy details - ICD10 code (malignancy #1) Format: string up to 4 characters

1912
Post-operative course to 6 months (or graft failure if earlier than 6 months) - Malignancy details - Date first diagnosed (malignancy #1) Format: DD/MM/YYYY

1913
Post-operative course to 6 months (or graft failure if earlier than 6 months) - Malignancy details - Could the malignancy be of donor origin? (malignancy #1) Categories:
1 - No evidence
2 - Yes - very likely
3 - Yes - possibly

1914
Post-operative course to 6 months (or graft failure if earlier than 6 months) - Malignancy details - Type of malignancy (malignancy #2) Format: Text

1915
Post-operative course to 6 months (or graft failure if earlier than 6 months) - Malignancy details - ICD10 code (malignancy #2) Format: string up to 4 characters

1916
Post-operative course to 6 months (or graft failure if earlier than 6 months) - Malignancy details - Date first diagnosed (malignancy #2) Format: DD/MM/YYYY

1917
Post-operative course to 6 months (or graft failure if earlier than 6 months) - Malignancy details - Could the malignancy be of donor origin? (malignancy #2) Categories:
1 - No evidence
2 - Yes - very likely
3 - Yes - possibly

1918
Post-operative course to 6 months (or graft failure if earlier than 6 months) - Malignancy details - Type of malignancy (malignancy #3) Format: Text

1919
Post-operative course to 6 months (or graft failure if earlier than 6 months) - Malignancy details - ICD10 code (malignancy #3) Format: string up to 4 characters

1920
Post-operative course to 6 months (or graft failure if earlier than 6 months) - Malignancy details - Date first diagnosed (malignancy #3) Format: DD/MM/YYYY

1921
Post-operative course to 6 months (or graft failure if earlier than 6 months) - Malignancy details - Could the malignancy be of donor origin? (malignancy #3) Categories:
1 - No evidence
2 - Yes - very likely
3 - Yes - possibly

1922
Graft and recipient status - Has the pancreatic islet graft failed? (C-peptide<50pmol/l) (Recipient died with a functioning graft, please record as failed with reason 90, death with functioning graft) Categories:
1 - No
2 - Yes
If YES futher details will be provided

1923
Graft and recipient status - Date of failure (date C-peptide recorded below 50pmol/l) Format: DD/MM/YYYY

1924
Graft and recipient status - Cause of failure Categories:
1 - Vascular thrombosis
2 - Infection
3 - Bleeding
6 - Primary non-function (no detectable C-peptide between 7 and 28 days)
7 - Patient declined medication
8 - Hyperacute rejection
9 - Acute rejection
10 - Chronic rejection
11 - Preservation / Procurement problem
12 - Instant blood mediated inflammatory reaction (IBMIR)
13 - Poor engraftment 14 - Functional decline (unknown cause)
15 - Recurrent autoimmunity
16 - Hepatitis / Steatosis
17 - Cholangitis
90 - Death with a functioning graft
98 - Other
99 - Unknown
If "Cause of failure" code is Other identified cause of death (98), then can be additionally specified in a separate field

1925
Graft and recipient status - Other identified cause of failure Text

1926
Graft and recipient status - Has the recipient died? Categories:
1 - No
2 - Yes
If YES futher details will be provided

1927
Graft and recipient status - Date of death Format: DD/MM/YYYY

1928
Graft and recipient status - Cause of death - Primary Categories:
11 - Cardiothoracic - Myocardial ischaemia and infarction
12 - Cardiothoracic - Hyperkalaemia
13 - Cardiothoracic - Haemorrhagic pericarditis
15 - Cardiothoracic - Sudden unexplained cardiac death
16 - Cardiothoracic - Hypertensive cardiac failure
17 - Cardiothoracic - Hypokalaemia
18 - Cardiothoracic - Fluid overload
19 - Cardiothoracic - Elevated PVR/Pulmonary hypertension
20 - Cardiothoracic - Airway dehiscence
75 - Cardiothoracic - Early graft dysfunction
76 - Cardiothoracic - Cardiac tamponade
14 - Cardiothoracic - Other causes of cardiac failure
77 - Cardiothoracic - ARDS
78 - Cardiothoracic - Respiratory failure
21 - Vascular - Pulmonary embolus
22 - Vascular - Cerebro-vascular accident
24 - Vascular - Haemorrhage from graft site
25 - Vascular - Haemorrhage from vascular access or dialysis circuit
26 - Vascular - Haemorrhage from ruptured vascular aneurysm (not Code 22 or 23)
27 - Vascular - Haemorrhage from surgery (not Codes 23, 24 or 26)
28 - Vascular - Other haemorrhage (not Codes 23-27)
30 - Infection - Pulmonary infection (protozoal)
31 - Infection - Pulmonary infection (bacterial)
32 - Infection - Pulmonary infection (viral)
33 - Infection - Pulmonary infection (fungal)
34 - Infection - Infections elsewhere (except viral hepatitis see Code 41 and 42)
35 - Infection - Septicaemia
36 - Infection - Tuberculosis (lung)
37 - Infection - Tuberculosis (elsewhere)
38 - Infection - Generalized viral infection
39 - Infection - Peritonitis (not Code 70)
41 - Liver disease - Liver, due to hepatitis B virus
42 - Liver disease - Liver, other viral hepatitis
43 - Liver disease - Liver, drug toxicity
44 - Liver disease - Cirrhosis, not viral
45 - Liver disease - Cystic liver disease
46 - Liver disease - Liver failure, cause unknown
23 - Gastro-intestinal - Gastro-intestinal haemorrhage
29 - Gastro-intestinal - Mesenteric infarction
62 - Gastro-intestinal - Pancreatitis
70 - Gastro-intestinal - Sclerosing (or adhesive) peritoneal disease
71 - Gastro-intestinal - Perforation of peptic ulcer
72 - Gastro-intestinal - Perforation of colon
51 - Social - Patient refused further treatment
52 - Social - Suicide
53 - Social - Therapy ceased for any other reason
47 - Miscellaneous - Renal failure
48 - Miscellaneous - Recurrent primary disease, benign
49 - Miscellaneous - Recurrent primary disease, malignant
61 - Miscellaneous - Uraemia caused by graft failure
63 - Miscellaneous - Bone marrow depression
64 - Miscellaneous - Cachexia
66 - Miscellaneous - Lymphoid malignant disease possibly induced by immunosuppressive therapy
67 - Miscellaneous - Lymphoid malignant disease not induced by immunosuppressive therapy
69 - Miscellaneous - Dementia
73 - Miscellaneous - Non-lymphoid malignant disease possibly induced by immunosuppressive therapy
74 - Miscellaneous - Non-lymphoid malignant disease not induced by immunosuppressive therapy
79 - Miscellaneous - Multi-system failure
81 - Accident - Accident related to treatment
82 - Accident - Accident unrelated to treatment
90 - Donor organ failure
98 - Other identified cause of death
99 - Unknown
If "Cause of death" code is Other identified cause of death (98), then can be additionally specified in a separate field

1929
Graft and recipient status - Cause of death - Primary - Other identified cause of death Text

1930
Graft and recipient status - Cause of death - Secondary Categories:
11 - Cardiothoracic - Myocardial ischaemia and infarction
12 - Cardiothoracic - Hyperkalaemia
13 - Cardiothoracic - Haemorrhagic pericarditis
15 - Cardiothoracic - Sudden unexplained cardiac death
16 - Cardiothoracic - Hypertensive cardiac failure
17 - Cardiothoracic - Hypokalaemia
18 - Cardiothoracic - Fluid overload
19 - Cardiothoracic - Elevated PVR/Pulmonary hypertension
20 - Cardiothoracic - Airway dehiscence
75 - Cardiothoracic - Early graft dysfunction
76 - Cardiothoracic - Cardiac tamponade
14 - Cardiothoracic - Other causes of cardiac failure
77 - Cardiothoracic - ARDS
78 - Cardiothoracic - Respiratory failure
21 - Vascular - Pulmonary embolus
22 - Vascular - Cerebro-vascular accident
24 - Vascular - Haemorrhage from graft site
25 - Vascular - Haemorrhage from vascular access or dialysis circuit
26 - Vascular - Haemorrhage from ruptured vascular aneurysm (not Code 22 or 23)
27 - Vascular - Haemorrhage from surgery (not Codes 23, 24 or 26)
28 - Vascular - Other haemorrhage (not Codes 23-27)
30 - Infection - Pulmonary infection (protozoal)
31 - Infection - Pulmonary infection (bacterial)
32 - Infection - Pulmonary infection (viral)
33 - Infection - Pulmonary infection (fungal)
34 - Infection - Infections elsewhere (except viral hepatitis see Code 41 and 42)
35 - Infection - Septicaemia
36 - Infection - Tuberculosis (lung)
37 - Infection - Tuberculosis (elsewhere)
38 - Infection - Generalized viral infection
39 - Infection - Peritonitis (not Code 70)
41 - Liver disease - Liver, due to hepatitis B virus
42 - Liver disease - Liver, other viral hepatitis
43 - Liver disease - Liver, drug toxicity
44 - Liver disease - Cirrhosis, not viral
45 - Liver disease - Cystic liver disease
46 - Liver disease - Liver failure, cause unknown
23 - Gastro-intestinal - Gastro-intestinal haemorrhage
29 - Gastro-intestinal - Mesenteric infarction
62 - Gastro-intestinal - Pancreatitis
70 - Gastro-intestinal - Sclerosing (or adhesive) peritoneal disease
71 - Gastro-intestinal - Perforation of peptic ulcer
72 - Gastro-intestinal - Perforation of colon
51 - Social - Patient refused further treatment
52 - Social - Suicide
53 - Social - Therapy ceased for any other reason
47 - Miscellaneous - Renal failure
48 - Miscellaneous - Recurrent primary disease, benign
49 - Miscellaneous - Recurrent primary disease, malignant
61 - Miscellaneous - Uraemia caused by graft failure
63 - Miscellaneous - Bone marrow depression
64 - Miscellaneous - Cachexia
66 - Miscellaneous - Lymphoid malignant disease possibly induced by immunosuppressive therapy
67 - Miscellaneous - Lymphoid malignant disease not induced by immunosuppressive therapy
69 - Miscellaneous - Dementia
73 - Miscellaneous - Non-lymphoid malignant disease possibly induced by immunosuppressive therapy
74 - Miscellaneous - Non-lymphoid malignant disease not induced by immunosuppressive therapy
79 - Miscellaneous - Multi-system failure
81 - Accident - Accident related to treatment
82 - Accident - Accident unrelated to treatment
90 - Donor organ failure
98 - Other identified cause of death
99 - Unknown
If "Cause of death" code is Other identified cause of death (98), then can be additionally specified in a separate field

1931
Graft and recipient status - Cause of death - Secondary - Other identified cause of death Text

1932
Clinical assessment - Date of clinical assessment of functioning graft (For grafts still functioning, please report an assessment undertaken no earlier than 22 weeks post-transplant) Format: DD/MM/YYYY

1933
Clinical assessment - Has the recipient been insulin independent at all since transplant? Categories:
1 - No
2 - Yes

1934
Clinical assessment - Current graft function Categories:
1 - Insulin independent
2 - Partial function
3 - No function

1935
Clinical assessment - IFCC-HbA1c (units: mmol/mol) Format: string up to 3 characters

1936
Clinical assessment - Date insulin ceased (If currently insulin independent) Format: DD/MM/YYYY

1937
Clinical assessment - Current insulin dose (If currently partial or no function) (units: unit/24hr) Format: string up to 3 characters

1938
Clinical assessment - Date insulin resumed (If previously insulin independent at any time since transplant) Format: DD/MM/YYYY

1939
Clinical assessment - Glucose lowering drug (For combination treatment only, please enter Drug 1 and Drug 2) - Drug 1 Categories:
0 - None
1 - Metformin
2 - Pioglitazone
3 - Rosi
4 - GLP1
5 - SU
6 - DPPIV
7 - Other

1940
Clinical assessment - Glucose lowering drug (For combination treatment only, please enter Drug 1 and Drug 2) - Drug 2 Categories:
0 - None
1 - Metformin
2 - Pioglitazone
3 - Rosi
4 - GLP1
5 - SU
6 - DPPIV
7 - Other

1941
Clinical assessment - C-peptide measured between 22 and 26 weeks post-transplant (units: pmol/l) Format: string up to 4 characters

1942
Clinical assessment - C-peptide measured between 22 and 26 weeks post-transplant - Measured on Format: DD/MM/YYYY

1943
Clinical assessment - Serum creatinine measured between 22 and 26 weeks post-transplant (units: umol/l, micro-mole per litre) Format: string up to 4 characters

1944
Clinical assessment - Serum creatinine measured between 22 and 26 weeks post-transplant - Measured on Format: DD/MM/YYYY

1945
Clinical assessment - Date of Meal Tolerance Test Format: DD/MM/YYYY

1946
Clinical assessment - Fasting glucose (units: mmol/l) Format: string up to 3 characters

1947
Clinical assessment - 90-minute glucose (units: mmol/l) Format: string up to 3 characters

1948
Clinical assessment - Fasting C-peptide (units: pmol/l) Format: string up to 4 characters

1949
Clinical assessment - 90-minute C-peptide (units: pmol/l) Format: string up to 4 characters

1950
Clinical assessment - Recipient weight at time of assessment (units: kg) Format: string up to 4 characters

1951
Clinical assessment - Current immunosuppressive drugs at date of assessment (Prior to graft failure for failed grafts, prior to death for deaths with a functioning graft) - Ciclosporin Categories:
1 - No
2 - Yes
9 - Unknown
If YES futher details will be provided

1952
Clinical assessment - Current immunosuppressive drugs at date of assessment (Prior to graft failure for failed grafts, prior to death for deaths with a functioning graft) - Ciclosporin (If administered) (units: mg/day) Format: string up to 5 characters

1953
Clinical assessment - Current immunosuppressive drugs at date of assessment (Prior to graft failure for failed grafts, prior to death for deaths with a functioning graft) - Tacrolimus Categories:
1 - No
2 - Yes
9 - Unknown
If YES futher details will be provided

1954
Clinical assessment - Current immunosuppressive drugs at date of assessment (Prior to graft failure for failed grafts, prior to death for deaths with a functioning graft) - Tacrolimus (If administered) (units: mg/day) Format: string up to 5 characters

1955
Clinical assessment - Current immunosuppressive drugs at date of assessment (Prior to graft failure for failed grafts, prior to death for deaths with a functioning graft) - Azathioprine Categories:
1 - No
2 - Yes
9 - Unknown
If YES futher details will be provided

1956
Clinical assessment - Current immunosuppressive drugs at date of assessment (Prior to graft failure for failed grafts, prior to death for deaths with a functioning graft) - Azathioprine (If administered) (units: mg/day) Format: string up to 5 characters

1957
Clinical assessment - Current immunosuppressive drugs at date of assessment (Prior to graft failure for failed grafts, prior to death for deaths with a functioning graft) - Mycophenolate Categories:
1 - No
2 - Yes
9 - Unknown
If YES futher details will be provided

1958
Clinical assessment - Current immunosuppressive drugs at date of assessment (Prior to graft failure for failed grafts, prior to death for deaths with a functioning graft) - Mycophenolate (If administered) (units: mg/day) Format: string up to 5 characters

1959
Clinical assessment - Current immunosuppressive drugs at date of assessment (Prior to graft failure for failed grafts, prior to death for deaths with a functioning graft) - Sirolimus/Everolimus Categories:
1 - No
2 - Yes
9 - Unknown
If YES futher details will be provided

1960
Clinical assessment - Current immunosuppressive drugs at date of assessment (Prior to graft failure for failed grafts, prior to death for deaths with a functioning graft) - Sirolimus/Everolimus (If administered) (units: mg/day) Format: string up to 5 characters

1961
Clinical assessment - Current immunosuppressive drugs at date of assessment (Prior to graft failure for failed grafts, prior to death for deaths with a functioning graft) - Prednisolone/Prednisone Categories:
1 - No
2 - Yes
9 - Unknown
If YES futher details will be provided

1962
Clinical assessment - Current immunosuppressive drugs at date of assessment (Prior to graft failure for failed grafts, prior to death for deaths with a functioning graft) - Prednisolone/Prednisone (If administered) (units: mg/day) Format: string up to 5 characters

1963
Clinical assessment - Current immunosuppressive drugs at date of assessment (Prior to graft failure for failed grafts, prior to death for deaths with a functioning graft) - Other Categories:
1 - No
2 - Yes
9 - Unknown
If YES futher details will be provided

1964
Clinical assessment - Current immunosuppressive drugs at date of assessment (Prior to graft failure for failed grafts, prior to death for deaths with a functioning graft) - Other (If administered) (units: mg/day) Format: string up to 5 characters

1965
Clinical assessment - Current immunosuppressive drugs at date of assessment (Prior to graft failure for failed grafts, prior to death for deaths with a functioning graft) - Other (If administered) Text

11. Pancreatic Islet Transplant - Annual follow-up (131 variables)

Select ID Name Description

1966
Recipient Details - Follow-up Centre Text

1967
Recipient Details - Centre code Format: string up to 6 characters

1968
Recipient Details - ODT Recipient number Format: string up to 6 characters

1969
Recipient Details - ODT Transplant ID Format: string up to 6 characters

1970
Recipient Details - Hospital number Text

1971
Transfer and non-attendance - The patient has transferred to another unit for follow-up Categories:
1 - If yes, please supply full details of unit now caring for this patient in the box below. Please include date of last contact with the patient.
2 - If you are able to make a final follow-up return, please complete and return this form.

1972
Transfer and non-attendance - The patient has not attended for this follow-up but is expected to attend for future follow-up. Complete section 7 and return this form Categories:
1 - No
2 - Yes

1973
Transfer and non-attendance - The patient is considered lost to follow-up. Further contact with the patient is not expected Categories:
1 - Please supply the reason for loss to all further follow-up in the box below
2 - Please include the date of the last contact with the patient
3 - If you are able to make a final follow-up return please complete and return this form

1974
Transfer and non-attendance - Follow-up details - Further details Text

1975
Transfer and non-attendance - Follow-up details - Date of last contact with the patient (If exact date cannot be established a partial date, for example month and year will be accepted) Format: DD/MM/YYYY

1976
Post-operative course - Number of treated pancreas rejection episodes in the last 12 months (0 = no rejection) Format: number

1977
Post-operative course - For first annual assessment only, please enter date of first episode after this transplant Format: DD/MM/YYYY

1978
Post-operative course - Employment status (`Replace `work` with `study` for recipients in full time education) Categories:
11 - Working - full time
12 - Able to work - chooses not to
13 - Able to work - unable to find work
14 - Working part time - by choice
15 - Working part time - due to disease
16 - Unable to work - due to disease
17 - Hospitalised
18 - Other
19 - Unknown
If code 18 (Other), then can be additionally specified in a separate field

1979
Post-operative course - Employment status (`Replace `work` with `study` for recipients in full time education) - Other Text

1980
Post-operative course - Smoking - Pipe / Cigars Categories:
1 - No
2 - Yes

1981
Post-operative course - Smoking - Cigarettes Categories:
1 - No
2 - Yes
3 - Ex

1982
Post-operative course - Smoking - If YES, no./day (Cigarettes) Format: string up to 2 characters

1983
Post-operative course - Smoking - If Ex, years since stop (To nearest years, 6 months = 1 year) Format: string up to 2 characters

1984
Post-operative course - Has this recipient developed evidence of a primary or recurrent disease in the islet graft during the past 12 months? Categories:
1 - No
2 - Yes

1985
Post-operative - Malignancy details - Has the recipient developed post-transplant lymphoproliferative disease (PTLD) or lymphoma in the 12 months? Categories:
1 - No
2 - Yes

1986
Post-operative - Malignancy details - Has the recipient developed a malignancy in the 12 months (excluding PTLD, lymphoma and cervical dysplasia)? Categories:
1 - No
2 - Yes
If YES futher details will be provided

1987
Post-operative - Malignancy details - Type of malignancy (malignancy #1) Format: Text

1988
Post-operative - Malignancy details - ICD10 code (malignancy #1) Format: string up to 4 characters

1989
Post-operative - Malignancy details - Date first diagnosed (malignancy #1) Format: DD/MM/YYYY

1990
Post-operative - Malignancy details - Could the malignancy be of donor origin? (malignancy #1) Categories:
1 - No evidence
2 - Yes - very likely
3 - Yes - possibly

1991
Post-operative - Malignancy details - Type of malignancy (malignancy #2) Format: Text

1992
Post-operative - Malignancy details - ICD10 code (malignancy #2) Format: string up to 4 characters

1993
Post-operative - Malignancy details - Date first diagnosed (malignancy #2) Format: DD/MM/YYYY

1994
Post-operative - Malignancy details - Could the malignancy be of donor origin? (malignancy #2) Categories:
1 - No evidence
2 - Yes - very likely
3 - Yes - possibly

1995
Post-operative - Malignancy details - Type of malignancy (malignancy #3) Format: Text

1996
Post-operative - Malignancy details - ICD10 code (malignancy #3) Format: string up to 4 characters

1997
Post-operative - Malignancy details - Date first diagnosed (malignancy #3) Format: DD/MM/YYYY

1998
Post-operative - Malignancy details - Could the malignancy be of donor origin? (malignancy #3) Categories:
1 - No evidence
2 - Yes - very likely
3 - Yes - possibly

1999
Graft and recipient status - Has the pancreatic islet graft failed? (C-peptide<50pmol/l) (Recipient died with a functioning graft, please record as failed with reason 90, death with functioning graft) Categories:
1 - No
2 - Yes
If YES futher details will be provided

2000
Graft and recipient status - Date of failure (date C-peptide recorded below 50pmol/l) Format: DD/MM/YYYY

2001
Graft and recipient status - Cause of failure Categories:
1 - Vascular thrombosis
2 - Infection
3 - Bleeding
6 - Primary non-function (no detectable C-peptide between 7 and 28 days)
7 - Patient declined medication
8 - Hyperacute rejection
9 - Acute rejection
10 - Chronic rejection
11 - Preservation / Procurement problem
12 - Instant blood mediated inflammatory reaction (IBMIR)
13 - Poor engraftment 14 - Functional decline (unknown cause)
15 - Recurrent autoimmunity
16 - Hepatitis / Steatosis
17 - Cholangitis
90 - Death with a functioning graft
98 - Other
99 - Unknown
If "Cause of failure" code is Other identified cause of death (98), then can be additionally specified in a separate field

2002
Graft and recipient status - Other identified cause of failure Text

2003
Graft and recipient status - Has the recipient died? Categories:
1 - No
2 - Yes
If YES futher details will be provided

2004
Graft and recipient status - Date of death Format: DD/MM/YYYY

2005
Graft and recipient status - Cause of death - Primary Categories:
11 - Cardiothoracic - Myocardial ischaemia and infarction
12 - Cardiothoracic - Hyperkalaemia
13 - Cardiothoracic - Haemorrhagic pericarditis
15 - Cardiothoracic - Sudden unexplained cardiac death
16 - Cardiothoracic - Hypertensive cardiac failure
17 - Cardiothoracic - Hypokalaemia
18 - Cardiothoracic - Fluid overload
19 - Cardiothoracic - Elevated PVR/Pulmonary hypertension
20 - Cardiothoracic - Airway dehiscence
75 - Cardiothoracic - Early graft dysfunction
76 - Cardiothoracic - Cardiac tamponade
14 - Cardiothoracic - Other causes of cardiac failure
77 - Cardiothoracic - ARDS
78 - Cardiothoracic - Respiratory failure
21 - Vascular - Pulmonary embolus
22 - Vascular - Cerebro-vascular accident
24 - Vascular - Haemorrhage from graft site
25 - Vascular - Haemorrhage from vascular access or dialysis circuit
26 - Vascular - Haemorrhage from ruptured vascular aneurysm (not Code 22 or 23)
27 - Vascular - Haemorrhage from surgery (not Codes 23, 24 or 26)
28 - Vascular - Other haemorrhage (not Codes 23-27)
30 - Infection - Pulmonary infection (protozoal)
31 - Infection - Pulmonary infection (bacterial)
32 - Infection - Pulmonary infection (viral)
33 - Infection - Pulmonary infection (fungal)
34 - Infection - Infections elsewhere (except viral hepatitis see Code 41 and 42)
35 - Infection - Septicaemia
36 - Infection - Tuberculosis (lung)
37 - Infection - Tuberculosis (elsewhere)
38 - Infection - Generalized viral infection
39 - Infection - Peritonitis (not Code 70)
41 - Liver disease - Liver, due to hepatitis B virus
42 - Liver disease - Liver, other viral hepatitis
43 - Liver disease - Liver, drug toxicity
44 - Liver disease - Cirrhosis, not viral
45 - Liver disease - Cystic liver disease
46 - Liver disease - Liver failure, cause unknown
23 - Gastro-intestinal - Gastro-intestinal haemorrhage
29 - Gastro-intestinal - Mesenteric infarction
62 - Gastro-intestinal - Pancreatitis
70 - Gastro-intestinal - Sclerosing (or adhesive) peritoneal disease
71 - Gastro-intestinal - Perforation of peptic ulcer
72 - Gastro-intestinal - Perforation of colon
51 - Social - Patient refused further treatment
52 - Social - Suicide
53 - Social - Therapy ceased for any other reason
47 - Miscellaneous - Renal failure
48 - Miscellaneous - Recurrent primary disease, benign
49 - Miscellaneous - Recurrent primary disease, malignant
61 - Miscellaneous - Uraemia caused by graft failure
63 - Miscellaneous - Bone marrow depression
64 - Miscellaneous - Cachexia
66 - Miscellaneous - Lymphoid malignant disease possibly induced by immunosuppressive therapy
67 - Miscellaneous - Lymphoid malignant disease not induced by immunosuppressive therapy
69 - Miscellaneous - Dementia
73 - Miscellaneous - Non-lymphoid malignant disease possibly induced by immunosuppressive therapy
74 - Miscellaneous - Non-lymphoid malignant disease not induced by immunosuppressive therapy
79 - Miscellaneous - Multi-system failure
81 - Accident - Accident related to treatment
82 - Accident - Accident unrelated to treatment
90 - Donor organ failure
98 - Other identified cause of death
99 - Unknown
If "Cause of death" code is Other identified cause of death (98), then can be additionally specified in a separate field

2006
Graft and recipient status - Cause of death - Primary - Other identified cause of death Text

2007
Graft and recipient status - Cause of death - Secondary Categories:
11 - Cardiothoracic - Myocardial ischaemia and infarction
12 - Cardiothoracic - Hyperkalaemia
13 - Cardiothoracic - Haemorrhagic pericarditis
15 - Cardiothoracic - Sudden unexplained cardiac death
16 - Cardiothoracic - Hypertensive cardiac failure
17 - Cardiothoracic - Hypokalaemia
18 - Cardiothoracic - Fluid overload
19 - Cardiothoracic - Elevated PVR/Pulmonary hypertension
20 - Cardiothoracic - Airway dehiscence
75 - Cardiothoracic - Early graft dysfunction
76 - Cardiothoracic - Cardiac tamponade
14 - Cardiothoracic - Other causes of cardiac failure
77 - Cardiothoracic - ARDS
78 - Cardiothoracic - Respiratory failure
21 - Vascular - Pulmonary embolus
22 - Vascular - Cerebro-vascular accident
24 - Vascular - Haemorrhage from graft site
25 - Vascular - Haemorrhage from vascular access or dialysis circuit
26 - Vascular - Haemorrhage from ruptured vascular aneurysm (not Code 22 or 23)
27 - Vascular - Haemorrhage from surgery (not Codes 23, 24 or 26)
28 - Vascular - Other haemorrhage (not Codes 23-27)
30 - Infection - Pulmonary infection (protozoal)
31 - Infection - Pulmonary infection (bacterial)
32 - Infection - Pulmonary infection (viral)
33 - Infection - Pulmonary infection (fungal)
34 - Infection - Infections elsewhere (except viral hepatitis see Code 41 and 42)
35 - Infection - Septicaemia
36 - Infection - Tuberculosis (lung)
37 - Infection - Tuberculosis (elsewhere)
38 - Infection - Generalized viral infection
39 - Infection - Peritonitis (not Code 70)
41 - Liver disease - Liver, due to hepatitis B virus
42 - Liver disease - Liver, other viral hepatitis
43 - Liver disease - Liver, drug toxicity
44 - Liver disease - Cirrhosis, not viral
45 - Liver disease - Cystic liver disease
46 - Liver disease - Liver failure, cause unknown
23 - Gastro-intestinal - Gastro-intestinal haemorrhage
29 - Gastro-intestinal - Mesenteric infarction
62 - Gastro-intestinal - Pancreatitis
70 - Gastro-intestinal - Sclerosing (or adhesive) peritoneal disease
71 - Gastro-intestinal - Perforation of peptic ulcer
72 - Gastro-intestinal - Perforation of colon
51 - Social - Patient refused further treatment
52 - Social - Suicide
53 - Social - Therapy ceased for any other reason
47 - Miscellaneous - Renal failure
48 - Miscellaneous - Recurrent primary disease, benign
49 - Miscellaneous - Recurrent primary disease, malignant
61 - Miscellaneous - Uraemia caused by graft failure
63 - Miscellaneous - Bone marrow depression
64 - Miscellaneous - Cachexia
66 - Miscellaneous - Lymphoid malignant disease possibly induced by immunosuppressive therapy
67 - Miscellaneous - Lymphoid malignant disease not induced by immunosuppressive therapy
69 - Miscellaneous - Dementia
73 - Miscellaneous - Non-lymphoid malignant disease possibly induced by immunosuppressive therapy
74 - Miscellaneous - Non-lymphoid malignant disease not induced by immunosuppressive therapy
79 - Miscellaneous - Multi-system failure
81 - Accident - Accident related to treatment
82 - Accident - Accident unrelated to treatment
90 - Donor organ failure
98 - Other identified cause of death
99 - Unknown
If "Cause of death" code is Other identified cause of death (98), then can be additionally specified in a separate field

2008
Graft and recipient status - Cause of death - Secondary - Other identified cause of death Text

2009
Post-transplant complications - Total number of days as inpatient during the last 12 months (Excluding transplant admission) Format: string up to 3 characters

2010
Post-transplant complications - Number of readmissions over the last 12 months (0 = No readmissions) Format: string up to 2 characters

2011
Post-transplant complications - Diabetic complications (Please indicate complications that have occurred during the last 12 months post-transplant, last 6 months for first annual assessment) - Number of severe hypoglycaemia events Format: string up to 2 characters

2012
Post-transplant complications - Diabetic complications (Please indicate complications that have occurred during the last 12 months post-transplant, last 6 months for first annual assessment) - If one or more, date of first event Format: DD/MM/YYYY

2013
Post-transplant complications - Diabetic complications (Please indicate complications that have occurred during the last 12 months post-transplant, last 6 months for first annual assessment) - Number of admissions with diabetic ketoacidosis Format: string up to 2 characters

2014
Post-transplant complications - Diabetic complications (Please indicate complications that have occurred during the last 12 months post-transplant, last 6 months for first annual assessment) - If one or more, date of first admission Format: DD/MM/YYYY

2015
Post-transplant complications - Diabetic complications (Please indicate complications that have occurred during the last 12 months post-transplant, last 6 months for first annual assessment) - Angina Categories:
1 - No
2 - Yes

2016
Post-transplant complications - Diabetic complications (Please indicate complications that have occurred during the last 12 months post-transplant, last 6 months for first annual assessment) - Myocardial infarction Categories:
1 - No
2 - Yes

2017
Post-transplant complications - Diabetic complications (Please indicate complications that have occurred during the last 12 months post-transplant, last 6 months for first annual assessment) - PCI Categories:
1 - No
2 - Yes
3 - Stent

2018
Post-transplant complications - Diabetic complications (Please indicate complications that have occurred during the last 12 months post-transplant, last 6 months for first annual assessment) - Coronary artery bypass graft Categories:
1 - No
2 - Yes

2019
Post-transplant complications - Diabetic complications (Please indicate complications that have occurred during the last 12 months post-transplant, last 6 months for first annual assessment) - Transient ischemic attack Categories:
1 - No
2 - Yes

2020
Post-transplant complications - Diabetic complications (Please indicate complications that have occurred during the last 12 months post-transplant, last 6 months for first annual assessment) - CVA Categories:
1 - No
2 - Yes

2021
Post-transplant complications - Diabetic complications (Please indicate complications that have occurred during the last 12 months post-transplant, last 6 months for first annual assessment) - Intermittent claudication Categories:
1 - No
2 - Yes

2022
Post-transplant complications - Diabetic complications (Please indicate complications that have occurred during the last 12 months post-transplant, last 6 months for first annual assessment) - PVD intervention Categories:
1 - None
2 - Angioplasty
3 - Bypass graft

2023
Post-transplant complications - Diabetic complications (Please indicate complications that have occurred during the last 12 months post-transplant, last 6 months for first annual assessment) - Foot ulceration Categories:
1 - No
2 - Yes
3 - Current

2024
Post-transplant complications - Diabetic complications (Please indicate complications that have occurred during the last 12 months post-transplant, last 6 months for first annual assessment) - Limb amputation Categories:
1 - No amputation
2 - Major limb amputation
3 - Digital amputation

2025
Post-transplant complications - Diabetic eye disease - Diabetic retinopathy confirmed by dilated digital photography Categories:
1 - No
2 - Yes

2026
Post-transplant complications - Diabetic eye disease - Registered blind Categories:
1 - No
2 - Yes - blind
3 - Yes - impaired

2027
Post-transplant complications - Diabetic eye disease - Laser photocoagulation Categories:
1 - No
2 - Yes

2028
Post-transplant complications - Diabetic eye disease - Cataract Categories:
1 - No
2 - Yes
3 - Extraction

2029
Post-transplant complications - Diabetic eye disease - Vitreous haemorrhage Categories:
1 - No
2 - Yes

2030
Post-transplant complications - Diabetic eye disease - Vitrectomy Categories:
1 - No
2 - Yes

2031
Post-transplant complications - Nephropathy / neuropathy / musculoskeletal (record current status) - Proteinuria Categories:
1 - No
2 - Microalbuminuria
3 - Macroalbuminuria

2032
Post-transplant complications - Nephropathy / neuropathy / musculoskeletal (record current status) - Ulceration Categories:
1 - No
2 - Yes

2033
Post-transplant complications - Nephropathy / neuropathy / musculoskeletal (record current status) - Postural hypotension Categories:
1 - No
2 - Yes

2034
Post-transplant complications - Nephropathy / neuropathy / musculoskeletal (record current status) - Erectile/sexual dysfunction Categories:
1 - No
2 - Yes

2035
Post-transplant complications - Nephropathy / neuropathy / musculoskeletal (record current status) - Peripheral neuropathy Categories:
1 - No
2 - Yes

2036
Post-transplant complications - Nephropathy / neuropathy / musculoskeletal (record current status) - Gastroparesis Categories:
1 - No
2 - Yes

2037
Post-transplant complications - Nephropathy / neuropathy / musculoskeletal (record current status) - Autonomic sweating Categories:
1 - No
2 - Yes

2038
Post-transplant complications - Nephropathy / neuropathy / musculoskeletal (record current status) - Charcot foot Categories:
1 - No
2 - Yes

2039
Post-transplant complications - Nephropathy / neuropathy / musculoskeletal (record current status) - Neuropathic pain score (0-10, 0 = no pain) Format: number

2040
Post-transplant complications - Nephropathy / neuropathy / musculoskeletal (record current status) - Diabetic enteropathy Categories:
1 - No
2 - Yes

2041
Post-transplant complications - Nephropathy / neuropathy / musculoskeletal (record current status) - Autonomic bladder dysfunction Categories:
1 - No
2 - Yes

2042
Post-transplant complications - Nephropathy / neuropathy / musculoskeletal (record current status) - Cheiroarthropathy Categories:
1 - No
2 - Yes

2043
Post-transplant complications - Nephropathy / neuropathy / musculoskeletal (record current status) - Mononeuropathy Categories:
1 - No
2 - Yes

2044
Post-transplant complications - Other autoimmune disease - Thyroid disease Categories:
1 - No
2 - Yes

2045
Post-transplant complications - Other autoimmune disease - Addison`s disease Categories:
1 - No
2 - Yes

2046
Post-transplant complications - Other autoimmune disease - Coeliac disease Categories:
1 - No
2 - Yes

2047
Post-transplant complications - Other complications - Has the recipient required readmission due to complications? Categories:
1 - No
2 - Yes
If YES, please indicate the complications present

2048
Post-transplant complications - Other complications - Portal vein / hepatic haemorrhage Categories:
1 - No
2 - Yes

2049
Post-transplant complications - Other complications - Portal vein thrombosis Categories:
1 - No
2 - Yes

2050
Post-transplant complications - Other complications - Perforated gall bladder Categories:
1 - No
2 - Yes

2051
Post-transplant complications - Other complications - CMV infection Categories:
1 - No
2 - Yes

2052
Post-transplant complications - Other complications - Viral systemic infection Categories:
1 - No
2 - Yes

2053
Post-transplant complications - Other complications - Other Categories:
1 - No
2 - Yes

2054
Post-transplant complications to 6 months (or graft failure if earlier than 6 months) Other complications - Urinary tract infection (UTI) - Other Categories:
1 - No
2 - Yes

2055
Post-transplant complications - Other complications - Bacterial systemic infection Categories:
1 - No
2 - Yes

2056
Post-transplant complications - Other complications - Intraperitoneal abscess Categories:
1 - No
2 - Yes

2057
Post-transplant complications - Other complications - Fungal systemic infection Categories:
1 - No
2 - Yes

2058
Post-transplant complications - Other complications - Number of laparotomies performed since transplant? (No laparotomies = 0) Format: number

2059
Post-transplant complications - Other complications - Futher details of above complications Text

2060
Post-transplant complications - Other complications - Has the recipient become registered blind in the last 12 months? Categories:
1 - No
2 - Yes

2061
Post-transplant complications - Visual acuity - Right Eye (6/6, 6/9, 6/12 etc., CF for counting fingers, HM for hand movements at 1 metre, LP for light perception, NP for no light perception) Format: string up to 3 characters

2062
Post-transplant complications - Visual acuity - Left Eye (6/6, 6/9, 6/12 etc., CF for counting fingers, HM for hand movements at 1 metre, LP for light perception, NP for no light perception) Format: string up to 3 characters

2063
Clinical assessment - Date of clinical assessment of functioning graft (For grafts still functioning, please report an assessment undertaken no earlier than 11 months post-transplant) Format: DD/MM/YYYY

2064
Clinical assessment - Has the recipient been insulin independent in the last 12 months (Last 6 months for first annual assessment)? Categories:
1 - No
2 - Yes

2065
Clinical assessment - Current graft function Categories:
1 - Insulin independent
2 - Partial function
3 - No function

2066
Clinical assessment - IFCC-HbA1c (units: mmol/mol) Format: string up to 3 characters

2067
Clinical assessment - Date insulin ceased (If currently insulin independent) Format: DD/MM/YYYY

2068
Clinical assessment - Current insulin dose (If currently partial or no function) (units: unit/24hr) Format: string up to 3 characters

2069
Clinical assessment - Date insulin resumed (If previously insulin independent at any time since transplant) Format: DD/MM/YYYY

2070
Clinical assessment - Glucose lowering drug (For combination treatment only, please enter Drug 1 and Drug 2) - Drug 1 Categories:
0 - None
1 - Metformin
2 - Pioglitazone
3 - Rosi
4 - GLP1
5 - SU
6 - DPPIV
7 - Other

2071
Clinical assessment - Glucose lowering drug (For combination treatment only, please enter Drug 1 and Drug 2) - Drug 2 Categories:
0 - None
1 - Metformin
2 - Pioglitazone
3 - Rosi
4 - GLP1
5 - SU
6 - DPPIV
7 - Other

2072
Clinical assessment - C-peptide measured nearest graft anniversary (For the first annual assessment please report level measured between 11 and 13 months post transplant) (units: pmol/l) Format: string up to 4 characters

2073
Clinical assessment - C-peptide measured nearest graft anniversary (For the first annual assessment please report level measured between 11 and 13 months post transplant) - Measured on Format: DD/MM/YYYY

2074
Clinical assessment - Serum creatinine measured nearest graft anniversary (For the first annual assessment please report level measured between 11 and 13 months post transplant) (units: umol/l, micro-mole per litre) Format: string up to 4 characters

2075
Clinical assessment - Serum creatinine measured nearest graft anniversary (For the first annual assessment please report level measured between 11 and 13 months post transplant) - Measured on Format: DD/MM/YYYY

2076
Clinical assessment - Date of Meal Tolerance Test Format: DD/MM/YYYY

2077
Clinical assessment - Fasting glucose (units: mmol/l) Format: string up to 3 characters

2078
Clinical assessment - 90-minute glucose (units: mmol/l) Format: string up to 3 characters

2079
Clinical assessment - Fasting C-peptide (units: pmol/l) Format: string up to 4 characters

2080
Clinical assessment - 90-minute C-peptide (units: pmol/l) Format: string up to 4 characters

2081
Clinical assessment - Recipient weight at time of assessment (units: kg) Format: string up to 4 characters

2082
Clinical assessment - Current immunosuppressive drugs at date of assessment (Prior to graft failure for failed grafts, prior to death for deaths with a functioning graft) - Ciclosporin Categories:
1 - No
2 - Yes
9 - Unknown
If YES futher details will be provided

2083
Clinical assessment - Current immunosuppressive drugs at date of assessment (Prior to graft failure for failed grafts, prior to death for deaths with a functioning graft) - Ciclosporin (If administered) (units: mg/day) Format: string up to 5 characters

2084
Clinical assessment - Current immunosuppressive drugs at date of assessment (Prior to graft failure for failed grafts, prior to death for deaths with a functioning graft) - Tacrolimus Categories:
1 - No
2 - Yes
9 - Unknown
If YES futher details will be provided

2085
Clinical assessment - Current immunosuppressive drugs at date of assessment (Prior to graft failure for failed grafts, prior to death for deaths with a functioning graft) - Tacrolimus (If administered) (units: mg/day) Format: string up to 5 characters

2086
Clinical assessment - Current immunosuppressive drugs at date of assessment (Prior to graft failure for failed grafts, prior to death for deaths with a functioning graft) - Azathioprine Categories:
1 - No
2 - Yes
9 - Unknown
If YES futher details will be provided

2087
Clinical assessment - Current immunosuppressive drugs at date of assessment (Prior to graft failure for failed grafts, prior to death for deaths with a functioning graft) - Azathioprine (If administered) (units: mg/day) Format: string up to 5 characters

2088
Clinical assessment - Current immunosuppressive drugs at date of assessment (Prior to graft failure for failed grafts, prior to death for deaths with a functioning graft) - Mycophenolate Categories:
1 - No
2 - Yes
9 - Unknown
If YES futher details will be provided

2089
Clinical assessment - Current immunosuppressive drugs at date of assessment (Prior to graft failure for failed grafts, prior to death for deaths with a functioning graft) - Mycophenolate (If administered) (units: mg/day) Format: string up to 5 characters

2090
Clinical assessment - Current immunosuppressive drugs at date of assessment (Prior to graft failure for failed grafts, prior to death for deaths with a functioning graft) - Sirolimus/Everolimus Categories:
1 - No
2 - Yes
9 - Unknown
If YES futher details will be provided

2091
Clinical assessment - Current immunosuppressive drugs at date of assessment (Prior to graft failure for failed grafts, prior to death for deaths with a functioning graft) - Sirolimus/Everolimus (If administered) (units: mg/day) Format: string up to 5 characters

2092
Clinical assessment - Current immunosuppressive drugs at date of assessment (Prior to graft failure for failed grafts, prior to death for deaths with a functioning graft) - Prednisolone/Prednisone Categories:
1 - No
2 - Yes
9 - Unknown
If YES futher details will be provided

2093
Clinical assessment - Current immunosuppressive drugs at date of assessment (Prior to graft failure for failed grafts, prior to death for deaths with a functioning graft) - Prednisolone/Prednisone (If administered) (units: mg/day) Format: string up to 5 characters

2094
Clinical assessment - Current immunosuppressive drugs at date of assessment (Prior to graft failure for failed grafts, prior to death for deaths with a functioning graft) - Other Categories:
1 - No
2 - Yes
9 - Unknown
If YES futher details will be provided

2095
Clinical assessment - Current immunosuppressive drugs at date of assessment (Prior to graft failure for failed grafts, prior to death for deaths with a functioning graft) - Other (If administered) (units: mg/day) Format: string up to 5 characters

2096
Clinical assessment - Current immunosuppressive drugs at date of assessment (Prior to graft failure for failed grafts, prior to death for deaths with a functioning graft) - Other (If administered) Text