“I wanted an opportunity to try and make a difference” – join the IBD Registry this World IBD Day

May 16, 2022

Collecting and analysing health data provides a wealth of information to help improve services for people with IBD and support research into better treatment and care.

As World IBD Day approaches on 19 May, we’re asking everyone with IBD to join the IBD Registry and be part of this valuable resource.

The NHS collects data from people with IBD who are treated in hospital to provide individual care. By combining this patient data through organisations such as the IBD Registry, we can start to see patterns and trends that tell us valuable information about how IBD affects people in different areas of their lives, and how these conditions are treated. By examining these patterns, we can spot opportunities to help improve IBD treatment and care. This might be through immediate changes to IBD services, or by supporting new research.

The IBD Registry has been collecting patient data from hospitals for many years, creating a combined database of more than 82,000 health records. Now, people with IBD can join the IBD Registry directly to maximise the value of their health data by:

  • agreeing to their data being used to help improve the care they receive from their hospital
  • agreeing to their data being used in IBD research
  • opting in to being contacted by the Registry about relevant studies about IBD they may want to take part in.

We’re delighted that so many people with IBD have already joined the IBD Registry to help improve treatment and care, and support research. The more people who join, the more value this combined health data has for hospitals and research teams working to improve the lives of people with IBD.

Deborah, who has ulcerative colitis and joined the IBD Registry online, said: “I joined the IBD Registry as I wanted an opportunity to try and make a difference to others with IBD. At times my ulcerative colitis has made me extremely poorly and by being part of the IBD Registry, I hope to make research accessible to all patients – something that I didn’t think I could be a part of before. The Registry is involved in lots of exciting projects to benefit people with IBD – and I’m excited to see what the future brings.”

You can hear more from Deborah and other people with IBD about why they joined the Registry here.

Find out more about…