IBD Registry

The IBD Registry captures longitudinal clinical data on patients with IBD at point of care from NHS Trusts across the UK. All patient records have a recorded diagnosis. The dataset includes broad demographics; phenotype of the disease; medications, plus greater details on biological treatments; clinical assessment and patient-reported outcomes. The dataset is available for retrospective studies (service evaluation and quality of care), and for research with prospective recruitment of consented patients for data already held. The dataset is currently held by NHS Digital, with explicit permissions for linkage, and as such is linkable to NHS Digital datasets such as HES.