Mapping the world of charity-supported patient registries

By Liz Perraudin, Clinical Policy Manager, AMRC

Published: 19 April 2024

More and more medical research charities are harnessing the potential of patient data registries to address the needs of their communities.

These databases of patient information are facilitating and accelerating research and building understanding of the progression and prevalence of disease. They play a vital role in improving patient access to new treatments and delivering better care and NHS services.

Six years ago, we spotlighted several charity-supported registries. Last year we decided it was time to expand our understanding of this world, so we started to map it.

136 member charities fed into our research through one-to-one conversations, focus groups, and a survey. We also spoke with several stakeholders.

What did we learn?

Through our research we found that 20 registries are currently supported by AMRC members: 10 are run by members (meaning they are the data controllers) and 10 are funded by them. 9 of the 20 registries are focused on rare disease, highlighting how charities are trying to bridge the data gap in this area. The registries varied significantly from one another, whether it was the number of people ‘in’ the registry, consent models, geographies, or the data collected.

19 members had previously run or supported a registry. For some, funding was taken over by others or were designed to be time limited. For others, the challenges surrounding running a registry (particularly the costs) meant they were no longer sustainable.

A further 25 members are considering setting up a registry. They’re at different stages of this process and the registries will focus on a diversity of health conditions.

What’s next?

We plan to raise awareness of these charity-supported registries and how they can be accessed for research. We’re also keen to offer support to charities considering setting up a registry and help them to avoid and overcome the challenges others have faced.

Working with stakeholders across the research sector and the health data landscape we’ll produce a framework of questions to consider in the early phases of setting up a registry. We hope this will bolster the chances of successful and sustainable charity-supported registries.

We’ll use all that we’ve learned to drive a supportive environment for patient data registries. There are significant shifts occurring in the landscape. This includes the move to a ‘data access by default’ policy, which will require researchers (in most cases) to access NHS data in Secure Data Environments. We want to make sure the voices of our member charities are listened to as these proposed changes develop.

Keep an eye out for this exciting work in the coming year and, as always, get in touch if you have any thoughts or questions.