The IBD Registry

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IBD Registry and biologics audit data submission deadlines:

11th January 2019
5th April 2019 (next)
5th July 2019
4th October 2019

The IBD Registry

The IBD Registry is a collection of curated and analysed data about inflammatory bowel disease in the UK.  With over 51,000 records, it is believed to be the largest database on IBD in Europe.

The purpose of the Registry in collecting this data is to create information that can improve the care and treatment of people in the UK with inflammatory bowel disease. We do this by creating information that gives better understanding:  about the disease phenotype;  about the treatments that patients receive, especially their efficacy and safety; about the care that patients receive; about outcome for patients.  Our growing dataset has the potential to enable new research into IBD and also to inform clinical commissioning decision.

What have we achieved so far?

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Our Strategic Plan 2019-20

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NHS England Quality Accounts 2019-20 (IBD Audit)

The Inflammatory Bowel Disease (IBD) Audit has been included as part of NHS England’s Quality Accounts 2019/20, and is provided by the IBD Registry. Each Trust should participate in the audit annually and publish a report each June on their NHS Choices website confirming their participation. The IBD Audit data is part of the main Registry dataset, designed to be as complementary as possible. To assist Trust Audit teams, the IBD Registry provides an additional paid service to help Trusts track and collate their data in preparation for publication. To find out more about the IBD Audit including the Quality Accounts service, please email: [email protected]

Biologics and Biosimilars

The IBD Registry’s main focus for 2019/20 remains on biologics, with the aim of developing a near-complete UK Register of IBD patients on biologic treatments; increasingly important with the growing number of biologics and biosimilars becoming available. We are capturing and analysing this important data closely so that we can provide IBD teams who are part of the Registry with a picture of the evolving biologics landscape:

  • Local data to manage their biologics patients and IBD service more effectively
  • National picture of biologics use, impact and resulting health outcomes
  • The opportunity to be part of a national audit of the safety and appropriate use of biologics and biosimilars

To find out more, including to join the IBD Registry, please email: [email protected]

Contact us

T: 020 3393 3969

E: [email protected]