The IBD Registry – taking stock over the last decade

Jan 9, 2020

Taking stock 

As the IBD Registry approaches ten years since the concept of collecting real world information on the progress of people living with IBD, it is timely to look under the bonnet at the data collected so far. With over 60,000 records, the Registry is one of the largest IBD registries in Europe.

Key to success has been collaboration with the University of Liverpool, AIMES, IBD UK, Gut Reaction (the health data research hub for IBD) and not least the enthusiastic participation of so many IBD clinical teams serving their patients.  Our 60,000 records contain rich information on patients’ progress which helps clinicians deliver better care:

  • one third of the records hold information on multiple follow-up reviews
  • nearly one half contain disease activity information
  • 7000 courses of steroids
  • over 9000 patients receiving mesalazine
  • and 15,000 receiving azathioprine or 6-mercaptopurine

The changing use of biologics and biosimilars is reflected in the evolving choice of first line biological agent and in the transition from one biologic to another, which the Registry has been able to report for the first time (IBD Registry Annual Report, October 2019).

Has the Registry made a difference?

  • During its oversight of the national biological therapies audit the Registry has reported a steady improvement in sites’ performance against the audit goals, implying safer initiation and monitoring of biologic drugs
  • The median duration of a course of steroids has fallen by more than a third between 2016 and 2019
  • IBD teams have received quarterly reports to inform their practice and as a stimulus to quality improvement initiatives
  • The Registry has shown that clinically useful information can be collected in real-time and can be used to influence patient care favourably

Going forward 

The Registry remains wedded to its founding purpose of improving care of patients and understanding of the treatments they receive, to enable research, and to increase knowledge about IBD in the UK.

To facilitate data collection from hard-pressed clinical teams, we have moved from collecting data only from two disease-specific platforms to being able to accept data submissions from a growing number of hospital-wide electronic patient record systems, departmental spreadsheets/databases and have succeeded in collecting information directly from patients.

We look forward to providing increasingly insightful reports to our participating teams to assist in their care of patients with IBD and in their service improvement and to supporting a growing number of research projects.

The IBD Registry Team

For more information please e: [email protected]

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