If you have Crohn’s, Colitis, or another form of IBD, you can join the IBD Registry and agree to your health data becoming part of this valuable resource. The more people who join, the more power the combined data has in increasing our knowledge about these conditions.
You can also give permission for your health data to be used in research projects that help improve outcomes for people living with Crohn’s and Colitis. And if you are particularly interested in research, the IBD Registry can also contact you about new studies that you may want to take part in. This helps researchers to recruit the participants they need to carry out successful studies.
What is the IBD Registry?
The IBD Registry collects health data from thousands of people across the UK living with Crohn’s and Colitis, as well as other types of inflammatory bowel disease (IBD). This information is collected by the Registry through NHS hospitals, and excitingly, can now be collected from people with Crohn’s and Colitis directly. Analysing this information helps the IBD Registry to build a national picture of the disease in order to support better treatment, care, and vital research.
The IBD Registry is owned and governed by the Royal College of Physicians, the British Society of Gastroenterology and Crohn’s & Colitis UK.
Clemmie’s story
Clemmie was diagnosed with Colitis at the age of 9, and now works as a nutritionist. She says: “I’m passionate about improving the lives of other people with Crohn’s and Colitis, so joining the IBD Registry was an easy decision for me. I joined the registry recently and found completing the online form very easy. It didn’t take much time and I felt like my data was safe and secure. If you want to help improve IBD services, or support research, I definitely recommend joining the IBD Registry.”
Find out more about the IBD Registry and how to join here. You can also follow the Registry on Twitter @IBDRegistry or sign up to their quarterly newsletter
