About our data
What can our data be used for?
The IBD Registry exists to improve the health of people with IBD through the collection and analysis of data. The two main ways we do this are through research and studies on service improvement (providing analysis of patient data to help hospital teams improve the quality of care they provide).
The Registry undertakes whole analytical projects, combining our knowledge of our data, analytical skills and clinical and academic rigour, to deliver aggregated results and reports.
What data do we hold?
Main IBD Registry dataset
Our main IBD Registry dataset captures longitudinal clinical data on patients with IBD at point of care from NHS Trusts across the UK. Over 95% of 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 can be used 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 (Hospital Episode Statistics).
The dataset listing is summarised in our Data Submission Framework and is listed on the HDR UK Gateway website. It provides a rich dataset of over 85,000 records uploaded by IBD hospital teams via NHS Digital to April 2022. The interactive graph (below) shows the breakdown of the data we hold between Crohn’s disease, ulcerative colitis and IBD Unclassified.
IBD COVID-19 dataset
Our IBD COVID-19 dataset is a consented IBD dataset of 9,800 people, with a further 30,000 ethically-permissioned records for research related to COVID-19 and IBD. This includes patient demographics; medications; plus vaccinations, responses and care received during the period from April 2020 to June 2021.
The dataset is consented for research under the Registry’s ethical permission, within our Secure Data Environment (SDE). The dataset collection can be read about on our COVID-19 page and is listed on the HDR UK Gateway website.
We have more information about how to apply to use our data here.