IBD Registry Ltd announces closure amidst NHS data landscape changes

Jan 22, 2024

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. 

UPDATE 15 FEB 2024: Data assets, including personal data, will be securely transferred to the Royal College of Physicians (RCP) who will act as interim stewards for the safeguarding of the data.  The RCP will become the new Data Controller at this point, and as such, will be responsible for the data.

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 our FAQs or alternatively:
IBD teams, please contact: [email protected]
People with IBD/Public, please contact: [email protected]
Other, please contact: [email protected]

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