IBD Registry PMS Released

9th December 2013

Following the pilot stage earlier this year involving clinical teams from Luton and Dunstable, Norfolk and Norwich, and St George’s paediatrics, the IBD Registry Patient Management System (PMS) delivered by InfoFlex, has been further refined to ensure it effectively supports clinical teams in delivering safe, high-quality, patient-centred care as part of an effective gastroenterology service.
The IBD Registry Board and CIMS are delighted to announce that the PMS is now available for release to early adopters. Registry Board Chair Stuart Bloom commented, “we’re very grateful to our pilots: Matthew Johnson, Mark Tremelling and Sally Mitton, for their invaluable input. Our Clinical Lead Fraser Cummings, has done an excellent job working with CIMS, and supported by Stephen Grainger, to hone the PMS so that it is easy to use and really delivers local clinical utility.”

Stuart will present the first tranche of data from the registry at the BSG Annual Meeting in June 2014.


The project management team are developing resources to help clinicians with local adoption. An example business case and an IT fact sheet are now available from simone.cort@ibdregistry.org.uk. These will also be available from ibdregistry.org.uk/resources very soon, where you can also find a number of presentations outlining the aims of the registry, minimum data set, and local benefits.

Early Adopters

The first wave of Trusts adopting the new PMS from January includes – in addition to the pilot sites – University College London Hospitals NHS Foundation Trust, Barking, Havering And Redbridge University Hospitals NHS Trust, Barts Health NHS Trust, Nottingham University Hospitals NHS Trust, and South Devon Healthcare NHS Foundation Trust, and there are a number of further clinical teams across the whole of the UK preparing to join.

To find out more about how you can join the IBD Registry contact simone.cort@ibdregistry.org.uk.


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