The Health Research Authority Research Ethics Service (RES) has approved the IBD Registry’s data collection and consent process, making research applications to access our data simpler, quicker and more cost-effective.
People with inflammatory bowel disease (IBD) can now consent to the IBD Registry directly, with an additional option to agree to their data being used for research. Our new status as an ethically approved research database means researchers can apply to use this consented data for retrospective studies without the need for further independent ethics approval for their proposed project.
People with IBD can also allow us to contact them about new studies they may be eligible for and interested in. This will make it easier for researchers to identify and recruit specific cohorts.
As a partner in Gut Reaction, a secure data resource designed to facilitate academic and industry research in IBD, data held in the IBD Registry can also be linked to national datasets held by other approved organisations, to create a rich resource for research.
IBD clinicians and academic researchers can apply to access our data through our data application process, including for linkage with data through Gut Reaction.
Providing a secure, ethically approved database, which allows for linkage and the identification and recruitment of specific cohorts, will support greater IBD research capability in the UK and ultimately benefit people living with IBD.
Dr Keith Bodger, Consultant Gastroenterologist and IBD Registry Academic Lead, said: “This is an exciting development for people living with IBD and for their clinical teams. It will provide greater opportunities for patients to get involved in research studies and to contribute to a growing repository of data to support UK IBD research. These new processes should make it easier to bring together patients, clinicians and researchers to leverage the potential of linked real-world data. This is a key milestone in the journey to establishing a ‘learning health system’ for IBD, whereby knowledge discovery becomes integrated into day-to-day care and where research participation becomes easier and more widely accessible across the UK.”