IBD Registry Ltd announces closure amidst NHS data landscape changes

The Board of Directors of the IBD Registry Ltd is saddened to announce the closure
of the IBD Registry at the end of March 2024.

The NHS data landscape is entering a period of considerable upheaval and change.
This will alter the way data is managed and used for improvement and research,
which will affect the company’s future. This uncertainty has created challenge in
evaluating our best future pathway, and as a result, the decision has been made to
close.

The IBD Registry re-uses real world clinical data collected at point of care alongside
working directly with patients. The collaboration of over 170 hospital teams and over
60,000 patients across the UK has resulted in successful research and ongoing
insights on IBD clinical care.

Recognition and thanks are due to all the collaborators: patients, partners and
colleagues for their support over the past five years, in particular the considerable
work of clinical teams in providing data.

In the time through to March 2024, current projects will be delivered and the best
possible legacy for the data and tools explored, maintaining data security and patient
confidentiality as always. There will be consultation with all stakeholders throughout
this period, especially the people with IBD whose data has been entrusted to the
Registry.

The British Society of Gastroenterology, Crohn’s & Colitis UK and the Royal College
of Physicians will continue their close working relationship to improve the quality of
IBD services through the UK and support research to meet the needs of people with
inflammatory bowel disease.

For further information, please consult the FAQs or alternatively:
IBD teams, please contact: support@ibdregistry.org.uk
People with IBD/Public, please contact: comms@ibdregistry.org.uk
Other, please contact: cressida.ward@ibdregistry.org.uk