IBD Registry COVID-19

The Registry has captured a consented research dataset from 9,800 patients with a further 30,000 ethically permissioned records for research related to IBD and COVID-19. This includes patient demographics, medications; plus vaccinations, responses and care received during COVID-19 period April 2020-June 2021. The original source of the data was the IBD Registry's COVID-19 IBD Risk Tool, which was launched at the start of the pandemic (1 April 2020) to allow people with IBD to self-assess their risk. It had a high uptake, with over 16,000 people completing it in the first week alone; by the first end of shielding in August 2020 ovr 37,000 people with IBD had completed it. Ethical permission was sought and received to re-contact participants for use of this data in research relate to IBD and COVID-19, along with a follow-on survey to give a second timepoint about one year later, which was by June 2021. 9,800 people consented and completed the follow-on (second timepoint) survey, with the ethical permissions allowing the original dataset (first timepoint only) to also be used in research under more restricted permissions providing all requests for withdrawal fulfilled.