The UK IBD Registry
Launching 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 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.
The Registry will be launched in early 2013, following a pilot stage to check that the system genuinely meets the needs of clinicians and helps them and their patients in the day-to-day running of their clinics. To find out more about joining, contact us.