Reflecting on 2022: a year of growth

Dec 19, 2022

The past year has seen huge change at the IBD Registry, and as 2022 draws to a close, we are grateful for all the support we have received from people with inflammatory bowel disease (IBD) and the clinical teams that care for them.

This year has seen great progress in our work to transform our processes to help maximise the value of patient data to help improve treatment and care for people with IBD, and support research.


A graphic showing key numbers achieved at the IBD Registry this year. This includes more than 2,200 people giving their consent to the Registry, and approving 2 new research studies. 92 hospitals have signed up to our new data submission platform. We have also sent out 400 bespoke reports to IBD hospital teams.


Earlier in 2022 we launched a new online consent form that enables people with Crohn’s disease, ulcerative colitis and other forms of IBD to directly consent to the Registry using their data to help improve treatment and care and support research. For the first time, people with IBD can also share additional information about their health with us directly through their own secure ‘My IBD Registry’ webpage. We’re delighted that more than 2,200 people with IBD have given their consent to the Registry this year, using our new process. Nearly 50% of those who have joined have also shared further information about their health with us.

This year we also established our own data platform to collect data from hospitals, working with one of the UK’s most trusted health data providers. This means NHS hospitals can share health data with us directly, and we can now receive data from hospitals in all four nations.

By linking hospital data with information shared directly by people with IBD, we can maximise the value of your health data to improve our understanding of these conditions. With growing numbers of people also consenting to their data being used for research, we are starting to work with academic partners on exciting research projects. We’ll be sharing more information about these in 2023.

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