The UK IBD Registry

IBD Registry Preliminary Data Presented

“The work of the IBD Standards, Audit and Registry are really critical in terms of driving up standards of care for patients.” David Barker, Crohn’s and Colitis UK

At BSG 2014, Clinical Lead, Dr Fraser Cummings presented the first data on over 4000 patients from the UK IBD Registry. This presentation gives an idea of the trends that can be observed using Registry data, such as patients’ smoking status or medication. One important development is the linkage with Hospital Episode Statistics (HES) data, which shows healthcare utilisation, e.g. the number of outpatient appointments and A&E admissions each year.

Early Adopters’ Lead, Dr Matthew Johnson provided practical advice on using the Registry Patient Management System (PMS) to support patient care, and explained how he and his team at Luton and Dunstable University Hospital have successfully used the system to fund an additional IBD specialist nurse.

We also launched our new Registry Information Pack, a step-by-step guide to joining the IBD Registry, including information for clinical teams, IT and Caldicott Guardians as well as an example business case, PMS screen shots and letters.

Setting the Registry within the broader context of raising standards in IBD, the panel also included Professor Mark Baker, Director of the NICE Centre for Clinical Practice, Dr Ian Arnott, Clinical Lead of the UK IBD Audit and David Barker Chief Executive of Crohn’s and Colitis UK and Chair of IBD Standards and Dr Stuart Bloom, Chair of IBD Registry.

To find out more about joining the Registry email

Dr Fraser Cummings presents the first data from the IBD Registry

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The UK IBD Registry

Launched at the 2013 BSG Annual Meeting in Glasgow on 26th June, the IBD Registry will provide the first ever UK-wide repository of anonymised IBD adult and paediatric patient data for prospective audit and research purposes. Bringing this data together for the first time will:

  • Drive continuous improvement in patient care and access to care across the UK
  • Inform commissioning and service design
  • Improve our understanding of long term outcomes
  • Provide local, regional & national data in order to better define the pattern of ulcerative colitis and Crohn’s disease
  • Support IBD research

Data can be entered via a web portal, a new IBD Patient Management System or from existing data bases. Because we anticipate the Registry becoming the vehicle for collecting IBD Audit data in future, the Registry Board is working closely with the IBD Audit and the Royal College of Physicians to ensure compatibility.


Why join in?

  • Allows services to measure their local performance against national results
  • Easier to monitor and improve quality
  • Facilitates benchmarking against the national performance which will inform local pathway development.
  • Links with IBD Audit
  • An excellent resource for research

The essential principle adopted by the Registry Board is that users get immediate local benefits for themselves and their patients with minimal time spent entering data. The IBD Patient Management System (PMS) has been designed to make it easy to collect data at the point of consultation, and upload it automatically into the national Registry. Features include a clinical summary showing the characteristics of the patient’s disease at a glance, GP letters and patient summaries, biologics management system, virtual clinics, MDT system etc. It will be possible to generate service reports and clinical audit at the click of a mouse.

The mandatory Registry dataset contains only 12 items, so participants can choose how much or how little data they contribute. The web portal option is ideal for users who choose to enter only the minimum data, and need less in the way of functionality.

To find out more about joining, contact us.