At the beginning of March, 2020, there was a pressing need to better understand the risks associated with COVID-19 faced by patients with inflammatory bowel disease (IBD), particularly those on immunosuppressive medications. Early in the pandemic, the International Organization of Inflammatory Bowel Disease brought together our two groups from Mount Sinai (New York, NY, USA) and the University of North Carolina (Chapel Hill, NC, USA) that had been working on the same topic in parallel. We understood that this rapidly evolving situation needed timely data acquisition and analysis. In response, together we developed the Surveillance Epidemiology of Coronavirus Under Research Exclusion for Inflammatory Bowel Disease (SECURE-IBD) registry to monitor and report on COVID-19 outcomes occurring in paediatric and adult patients with IBD. This international, collaborative effort was developed in partnership with 38 international, national, and regional organisations. 1 Developing the registry came with a unique set of challenges. One of the most important hurdles we faced was creating a case report form that requested enough information to adequately assess COVID-19 outcomes and demographic or disease factors, without overburdening busy clinicians. After many iterations, we arrived at a form that could not only be completed in under 5 min but also answer the most pressing clinical questions. To ensure that providers felt confident in the security and anonymity of the report, we included only de-identified data as per the HIPAA Safe Harbor De-Identification Standards. The database was easily accessible through a website and stored on a secure web platform (REDCap version 10.0. 15; Vanderbilt University, Nashville, TN, USA). To raise awareness and encourage reporting of cases, we partnered with national and international organisations to promote the registry through professional listservs, social media, and society websites. We then organised an international advisory committee of leaders in IBD from across the world who provided advice on the registry design and analyses, as well as on networking and project promotion. We used webinars, Twitter, and Facebook Live events to engage the international gastroenterology community and to deliver preliminary results. This international, collaborative effort paid off: as of Aug 11, 2020, 2035 cases have been reported to the registry and 115 121 unique users have accessed the project website.

A major success of SECURE-IBD has been the rapid collaborative mobilisation of the IBD community worldwide. Key to this effort was the transparency and real-time (at least weekly) updating of raw aggregate data on the SECURE-IBD website. The website also directs providers and patients to national and international educational resources on COVID-19. The combination of open data sharing, emphasising that we are all in this together, and the collegiality and generosity of the many reporting providers were essential elements in building SECURE-IBD. Colleagues from University of Calgary (Calgary, AB, Canada) added an interactive map providing a visualisation of the SECURE-IBD data to the project website, modelled after the Johns Hopkins COVID-19 Dashboard. To assist parallel efforts in other disease states, we directly consulted with colleagues starting similar registries and posted our study’s case report form and protocol on the website to serve as a blueprint for other COVID-19 registries (eg, SECURE-Eosinophilic Esophagitis