Question to the Department of Health and Social Care:

To ask the Secretary of State for Health, what assessment he has made of the potential effects on healthcare of the introduction of a registry of patients with inflammatory bowel disease in England; and what support his Department has provided for that registry.

The IBD (inflammatory bowel disease) Registry provides a United Kingdom-wide repository of anonymised IBD adult and paediatric patient data for prospective audit and research purposes. Patients must consent for their data to be added to the registry. The Healthcare Quality Improvement Partnership (HQIP) has allocated transitional funding this year to incorporate IBD audit data collection into the IBD Registry, providing an enhanced system for data capture and quality improvement that will be available to every hospital in the UK. This will allow the entry of data locally and support service improvement. Initially the focus will be for IBD patients receiving biologic treatments, but the system will address other key aspects of IBD care in the future.

The second step of data collection will be to focus on new patients with IBD to begin to understand the incidence of IBD in the UK. This picture will build up over a number of years and be dependent on the engagement of clinicians.

No specific assessment of the potential effects on healthcare due to the introduction of a registry of patients with IBD in England has been made. However, the data provided through the register can support National Health Service services in areas such as the assessment of local IBD populations as well as in measuring incidence and outcomes with services in other parts of the UK.

Although there is no direct Department funding, HQIP have given £290,000 for a year’s transition funding to join the audit data with the registry.

The National Institute for Health and Care Excellence (NICE) recommends faecal calprotectin testing as an option to help doctors distinguish between inflammatory bowel diseases, such as Crohn’s disease and ulcerative colitis, and non-inflammatory bowel diseases, such as irritable bowel syndrome.

The NICE IBD Quality Standard states that general practitioners (GP) and GP practices should ensure that testing is offered and clinical commissioning groups should ensure the diagnostic services are in place to support this.