The IBD Registry has listed two datasets on the Health Data Research Innovation Gateway, making it easier for researchers to learn about our data and apply to use it for studies investigating inflammatory bowel disease (IBD).
We work to improve the health of people with IBD through the collection and analysis of data. The two main ways we do this are through studies on service improvement (helping hospital teams improve the quality of care they provide) and research.
Investigators conducting studies related to IBD can apply to use our data, which is available as two separate datasets:
- Our main IBD Registry dataset, which contains health information about people with IBD, updated regularly by NHS IBD hospital teams across the UK.
- Our IBD COVID-19 dataset, which contains health information about people with IBD captured during the pandemic, available for studies related to COVID-19 and IBD. This dataset is consented with ethical permission for research.
You can read more about our data here.
The Health Data Research Innovation Gateway has rated the quality of our datasets as gold – meaning the types of data they include, and the completeness of the records (the number of records that include all the essential items of data), are of a high standard and therefore more useful for research purposes.
You can read about studies using IBD Registry data to further our understanding of IBD and improve treatment and care on our Analysis and Research page.