The British Society of Gastroenterology (BSG), The Royal College of Physicians (RCP), and Crohn’s and Colitis UK, have joined forces to launch IBD Registry Ltd – an independent not-for-profit company and a new legal entity that positions the Registry for future growth.

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As the Registry develops from its origins as a BSG-sponsored initiative, the partners see this stakeholder alliance as the ideal structure to ensure a sustainable future, firmly aligned with expanding and improving the Registry.

Martin Lombard, BSG President said: “The BSG remains committed to supporting high quality care and outcomes for people with IBD, and the IBD Registry is vital for supporting service improvement and answering key research questions. This new partnership offers a solid multi-professional and patient foundation for the project to thrive as an organisation in its own right and continue to meet patient needs.”

Building on its considerable success to date, the new legal structure allows the IBD Registry greater flexibility, and enables it to take advantage of opportunities for national and international collaboration.  The new company’s intention is to improve staffing, and support for sites, and recruitment is already underway to appoint the first CEO of IBD Registry Ltd.

The Board of the new company has ambitious plans, including the development of a long-term strategy that places the Registry at the heart of IBD research and health service developments, as well as maximising opportunities for patient-entered data.

The Registry’s primary focus remains on delivering useful local data that helps IBD teams to provide better care to their patients.   There are no planned disruptions to the services offered to participants as a result of these changes, and teams should continue to contact [email protected] with any queries.

Dr. Stuart Bloom, Chair of IBD Registry until the formation of the new company, and now Medical Director of IBD Registry Ltd commented: “we are proud that clinical teams across the UK have invested precious time in supporting the UK IBD Registry. We know that this initiative has the potential to change practice and improve the care we give to our patients. This new phase will open up opportunities for patient participation and linkage with projects in other fields. Continued progress is dependent on continued participation from clinical teams. Please carry on the good work with data entry: the next 12 months will see evidence that time spent on the Registry is rewarded by data reflecting quality of care delivered.”

For more information, please contact [email protected]

9th February 2018

The UK IBD Registry

The Inflammatory Bowel Disease (IBD) Registry is the first UK-wide collection of anonymised adult and paediatric IBD data for prospective audit and research. Routine clinical information entered once into an electronic patient record at the point of care, can be used to meet many different needs.

The Registry’s main focus for 2016/17 is on biologics, and the aim is to develop a near-complete UK Register of IBD patients on biologics by the end of 2017. Being part of the Registry will give IBD teams:

  • Local data to manage their biologics patients and IBD service more effectively
  • The chance to be part of a national audit of the safety and appropriate use of biologics and biosimilars

The IBD Registry Biologics Audit is part of NHS England’s Quality Accounts 2017/18

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