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Coronavirus and IBD reporting registry

Updated on: 01 Apr 2020   First published on 17 Mar 2020

Given the interest in the emerging and evolving coronavirus (COVID-19) epidemic and the questions regarding how this will impact patients with IBD, many of whom may be undergoing treatment with immune suppression, we decided to create a secure, online, de-identified Personal Health Identifier (PHI)-free reporting registry.  We encourage IBD clinicians worldwide to report ALL cases of COVID-19 in their IBD patients, regardless of severity (including asymptomatic patients detected through public health screening).  Reporting a case to this Surveillance Epidemiology of Coronavirus) Under Research Exclusion (SECURE)-IBD registry should take approximately 5 minutes.  With the collaboration of our entire IBD community, we will rapidly be able to define the impact of COVID-19 on patients with IBD and how factors such as age, comorbidities, and IBD treatments impact COVID outcomes.

Key points

  1. This is an international effort—we are counting on robust participation and collaboration.
  2. On the project website, web.unc.edu we will provide regularly updated summary information about reported cases, including numbers of cases by country, number of cases by treatment, etc. so the entire IBD community has access to these data.
  3. The registry contains only de-identified data, in accordance with HIPAA Safe Harbor De-Identification standards.
  4. The UNC-Chapel Hill Office for Human Research Ethics has determined that storage and analysis of de-identified data does not constitute human subjects research as defined under federal regulations [45 CFR 46.102 and 21 CFR 56.102] and does not require IRB approval.

We hope you will actively contribute to this voluntary reporting system.  Through broadscale participation and collaboration, we will be able to answer these very pressing questions for our IBD patients and their caregivers.

To report a case of coronavirus, click here or visit covidibd.web.unc.edu

If you have any questions, please reach out to [email protected]

In addition to the reporting cases of COVID-19 to SECURE-IBD, we also encourage reporting to your local public health agency where applicable.

Sincerely,

 

Michael D. Kappelman, MD, MPH (Pediatric Gastroenterologist, University of North Carolina at Chapel Hill)

Erica J. Brenner, MD (Pediatric Gastroenterology fellow, University of North Carolina at Chapel Hill)

Ryan Ungaro, MD (Gastroenterologist, Icahn School of Medicine at Mount Sinai, New York)

 


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