On 20 May 2025, QUOD was pleased to take part in an important meeting held in Birmingham by the UK Organ Donation and Transplantation Research Network (UKODTRN). The event, “Maximising the Research Potential of the UK Transplant Registry (UKTR): Barriers and Solutions”, was a great success, with excellent engagement from colleagues across the UK with an interest in transplant data science and enthusiasm to maximise the research output using UKTR data.
The meeting acknowledged the tremendous work done by colleagues at NHSBT to support current research efforts using the UKTR parallel to the specific focus on operational delivery work. Over the course of the day, with national and international speakers including Prof James Hunter representing QUOD, sharing their experience and insight, the meeting identified 10 key themes for improving the UKTR for the future. These focused on enhancing the access, quality, linkage, and breadth of the data, strengthening governance and IT infrastructure, securing specific funding to support research endeavours, and involving patients more meaningfully. Attendees emphasized that streamlining data access and improving linkage across existing silos would foster better clinical care, more robust research, and position the UKTR as a world-class resource. Patient involvement emerged as crucial, particularly in ensuring data reflects outcomes and experiences that matter to them. The need for clearer governance, public transparency in data use, and standardization of data input from hospitals were also discussed as strategic priorities.
To achieve these goals, it was acknowledged that the UKTR’s current structure—split across NHSBT teams without a central responsible body—limits its strategic potential. While some changes could occur without new funding, many proposed improvements, especially those involving IT improvements, more robust data capture, and enhanced artificial intelligence capabilities, would require significant monetary investment. Enhancing the UKTR would not only improve research output and attract industry investment/collaboration, but also support the implementation of national organ utilisation strategies. Overall, a unified vision and collaborative leadership across NHSBT directorates and commissioners are essential to modernising the UKTR. The UKODTRN will champion the need for strategic investment into the UKTR and will work with network partners to lobby relevant stakeholders.
Blog by Karen Rockell (UKODTRN Co-Director and PPIE Lead)