We are the national registry for IBD, and we collect real world longitudinal patient data primarily through NHS hospitals across the UK in order to support research and clinical quality of care studies. We also collect data directly from people with IBD, and in linking these two datasets together we can build a powerful picture of IBD in the UK today. 

We are a not-for-profit limited company co-owned by three organisations: the British Society of Gastroenterology, the Royal College of Physicians and Crohn’s & Colitis UK. 

Liz Dobson, Chief Executive Officer at the IBD Registry, says: “The IBD Registry’s mission is to drive forwards research in the inflammatory bowel diseases (IBD) by providing an efficient research platform, based around our longitudinal real world data, for all scientists working to improve outcomes for people with IBD. We believe the future lies in the joining together of our organisations as well as the data we hold, and we are very much looking forward to working with our new Alliance partners to help improve health data research for everyone.” 

Datasets

We hold a number of different datasets, including our main dataset of real world longitudinal clinical IBD data, from NHS Trusts, with HRA ethically approved research permissions in place; plus our older equivalent dataset, but without the same permissions. The dataset includes demographics; diagnosis and phenotype; medications (greater details on biologics); interventions; clinical assessment and PROMS. We also hold a participants dataset, plus other more specialist datasets, such as a COVID–19 study dataset. 

Further Information

Main IBD Registry dataset available in the Innovation Gateway 

IBD Registry Covid-19 dataset available in the Innovation Gateway 

About our data 

Research and studies 

Story of the Covid-19 IBD Risk Tool and Covid-19 dataset 

Website: ibdregistry.org.uk
Twitter: @IBDRegistry
LinkedIn: @IBDRegistry