How does the IBD Registry help improve treatment and care?
We collect health data from NHS hospitals that provide treatment and care for people with Crohn’s and Colitis. Analysing this information helps hospitals find out where they can improve their services and how effective different treatments are. For example, we can find out how long people are taking a particular medication before moving on to a different treatment. It also shows us how often people are having their medication reviewed by their IBD teams to check that they are working.
Clemmie joined the IBD Registry to support ongoing improvements to hospital services for people with Crohn’s and Colitis. She was diagnosed with Colitis at the age of 9, and now works as a nutritionist.
A lovely client of mine made me aware of the IBD Registry and I’m so glad she did. I’m passionate about improving the lives of other people with Crohn’s and Colitis, so joining the Registry was an easy decision for me. In my job I see that hospitals vary greatly, so anything we can do to help improve them is so important.
I joined the IBD Registry recently and found completing the online form very easy. It didn’t take much time and felt like my data was safe and secure. If you want to help improve IBD services, or support research, I definitely recommend joining the registry.
Clemmie
Living with Colitis
How does the IBD Registry support research?
If you join the IBD Registry, you can give permission for your health data to be used in research projects that help improve outcomes for people living with Crohn’s and Colitis. This is separate to allowing your data to be used in improving hospital services, so you have control over how your data is used.
If you are particularly interested in research, we can also contact you about studies that you may want to take part in. This helps researchers to recruit the participants they need and carry out successful studies.
The IBD Registry is also a partner in Gut Reaction, which means our data can be combined with data from other approved organisations, such as the IBD BioResource. This can support more in-depth research into Crohn’s and Colitis, and other forms of IBD.
For example, combined data from the IBD Registry and the IBD BioResource is being used in a study investigating the risks of severe side effects from COVID-19 for people on immunosuppressants. This study was made possible thanks to the 10,000 people who agreed to their data being used for research into IBD and COVID-19.
Anne joined the Registry because she wants to support future research into Crohn’s and Colitis. She was diagnosed with Crohn’s when she was 28 and is now 73.
I get involved in research because all those years ago I was worried about having children, and how Crohn’s or Colitis might affect them. Now with two healthy children in their 40s and five grandsons, I’m even more invested in supporting further research into new treatments and knowing exactly what causes the conditions.
I haven’t had a Crohn’s flare since 1990, but I have had other health problems appearing as I get older, and these may all be connected. I’m often in contact with new patients, and I hear all kinds of stories about lengthy delays before diagnosis and urgent bowel surgery due to missed symptoms. I’d like to see progress on all these issues.
I heard about the IBD Registry through Crohn’s & Colitis UK, and I think it’s important to share our experiences - good and bad - so that in future new systems can be put in place to improve diagnosis and treatment.
Anne
Living with Crohn's
Join the IBD Registry
We'll use your data to support better care for people with Crohn's and Colitis
