Maximising the research potential of the UK Transplant Registry: barriers and solutions
On Tuesday 20th May 2025, the UK Organ Donation and Transplantation Research Network (UKODTRN) hosted a meeting in Birmingham to discuss the UK Transplant Registry (UKTR) and its role in research.
With speeches from clinicians, researchers, patients, and industry representatives, it was a collaborative and engaging day for those with an interest in transplant data science and enthusiasm to maximise the research opportunities that can come from using UKTR data.
Key themes
The meeting acknowledged the tremendous work done by colleagues at NHSBT to support current research efforts using the UKTR alongside their focus on operational delivery work.
With national and international speakers sharing their experience and insight, the meeting identified some key themes for improving the UKTR for the future.
These included:
- Enhancing the access, quality, linkage, and breadth of the data
- Strengthening governance and IT infrastructure
- Securing specific funding to support research endeavours
- Involving patients more meaningfully
Attendees emphasized that streamlining data access and improving linkage across existing datasets 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.
Recommendations
To achieve these goals, it was acknowledged that the UKTR's current structure of being 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 investment.
Enhancing the UKTR would not only improve research output, attract industry investment/collaboration but can also support implementation of national organ utilisation strategies. Overall, a unified vision and collaborative leadership across NHSBT directorates and commissioners are essential to modernising the UKTR.
What next?
The UKODTRN will champion the need for strategic investment into the UKTR and will work with network partners to lobby relevant stakeholders.