People with inflammatory bowel disease (IBD), including Crohn’s disease, ulcerative colitis and other forms of IBD, can now join the IBD Registry online.
The IBD Registry collects health data from NHS hospitals and analyses this information to help improve services for people with IBD and support new research into these conditions.
We have launched a new online form, co-designed with our Patient Advisory Group, to enable people with IBD to agree to their data being included in this valuable resource. They can also consent to being contacted by the Registry about new research projects they may be eligible for and interested in. This helps researchers to recruit the participants they need.
IBD affects more than 500,000 people across the UK and can be extremely debilitating, with impacts on every area of a person’s life. The causes of IBD are not yet fully understood, so research into these conditions is especially valuable.
By joining the Registry (using our online tool or paper form) and allowing data from their health record to become part of our research database, people with IBD will also support innovative research through Gut Reaction, a secure data resource designed to facilitate academic and industry research in IBD.
Combining Registry data with information from thousands of other people living with IBD can provide a powerful research resource to help find new ways of diagnosing, treating or preventing these conditions.
Professor Stuart Bloom, Consultant Gastroenterologist and IBD Registry Chief Medical Officer, said: “This is a new opportunity for people with IBD to directly share information about their health with the Registry and allow us to match this information with their hospital record. Enabling us to grow this valuable database for research is a really helpful way that patients can actively support new studies into inflammatory bowel disease.”
Anyone in the UK with a confirmed diagnosis of IBD can sign up to join the IBD Registry and support vital research. Currently we are focusing on the adult population, but we are also working on a consent process for children and young people with IBD.