Sections

IBD Registry Update

The first of three pilot sites for the UK IBD Registry started trialling the system on Tuesday 15th January. Launching later this year, the Registry will provide the first ever UK-wide repository of anonymised IBD patient data for prospective audit and research. By bringing this data together for the first time, the Registry Board aims to:

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

Data can be entered either from existing databases, via a web portal, or by means of a new IBD Patient Management System (PMS), which has been developed by Chameleon Information Systems Ltd (suppliers of InfoFlex) under the guidance of Clinical Lead, Fraser Cummings. Fraser and his team have designed the PMS so that data can be easily entered during the consultation. The PMS will also provide real-time benefits such as a clinical summary of each patient at a glance, to save time leafing through paper notes, and work lists to support, for example, azathioprine monitoring, biologics follow-up or MDT meetings. Subject to local IT arrangements, the PMS can also be integrated with local PAS to further minimise data entry.

The pilot stage is due to run till March, and the launch of the Registry is scheduled for the BSG conference in June.

To find out more about the project, and how you can join, visit www.ibdregistry.org.uk or email This e-mail address is being protected from spambots. You need JavaScript enabled to view it