key: cord-0770467-owd5wx7y
authors: Brenner, Erica J; Ungaro, Ryan C; Colombel, Jean-Frederic; Kappelman, Michael D
title: IBD in the COVID-19 era: the value of international collaboration
date: 2020-09-14
journal: Lancet Gastroenterol Hepatol
DOI: 10.1016/s2468-1253(20)30269-7
sha: 050c7227e00f20437436dee7ae2a2d9344dd9a89
doc_id: 770467
cord_uid: owd5wx7y

nan

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 further changes that might present if lockdown conditions change remain to be elucidated.

In summary, lockdown represents a risk factor for increasing alcohol consumption in people with alcohol use disorders and relapse for those who were previously abstinent. Those who do relapse are at a high risk of harmful drinking and require a tailored approach for follow-up and intervention. Support from alcohol liaison services could prevent relapse during lockdown.

We declare no competing interests. and Eosinophilic Gastrointestinal Diseases, 2 SECURE-Cirrhosis, PsoProtect). 3 These interactions fostered collaborations with leaders in rheumatology and dermatology, with ongoing projects pooling data to investigate the impact of COVID-19 across immune-mediated diseases. 3 Initial data from SECURE-IBD highlight the negative association of corticosteroids with COVID-19 outcomes and the probable safety of tumour necrosis factor antagonists. 4 However, many questions need to be answered, including the effects of new biologics and different combinations of immunosuppressive therapies. Although there are inherent limitations to observational registry data, we hope that SECURE-IBD has provided vital early information to help clinicians and patients with IBD make more informed clinical decisions in the COVID-19 era. EJB 

Our partners. covidibd. org/our-partners

Characteristics associated with hospitalisation for COVID-19 in people with rheumatic disease: data from the COVID-19 Global Rheumatology Alliance physician-reported registry

but not TNF antagonists, are associated with adverse COVID-19 outcomes in patients with inflammatory bowel diseases: results from an international registry