In response to the rapidly expanding COVID-19 pandemic, the Celiac Disease Center at Columbia University has launched a new patient registry, SECURE-Celiac (Surveillance Epidemiology of Coronavirus Under Research Exclusion). The registry seeks to answer questions about how patients with celiac disease are affected by COVID-19. There are theoretical concerns related to the fact that patients with celiac disease have a slightly higher risk of developing zoster (shingles) and complications from influenza and pneumococcal pneumonia, risks that persist in the long-term after adoption of the gluten-free diet. Because of this, studying outcomes of COVID-19 in patients with celiac disease is important.
The Celiac Disease Foundation has partnered with the Celiac Disease Center at Columbia University to encourage celiac patients diagnosed with COVID-19 to ask their healthcare provider to go to covidceliac.org and report their case.
SECURE-Celiac contains only de-identified data, which means no data is entered that can personally identify any patient. Reporting a case should take your doctor no more than five minutes. Only laboratory-confirmed COVID-19 cases should be reported.
With the help of the entire celiac community, we will rapidly be able to define the impact of COVID-19 on patients with celiac disease and how factors such as age, comorbidities, and treatments impact COVID-19 outcomes.
For Healthcare Providers
The Celiac Disease Center at Columbia University has created a secure, online, de-identified Personal Health Identifier (PHI)-free reporting registry at covidceliac.org. Clinicians worldwide are encouraged to report ALL cases of COVID-19 in their patients with celiac disease, regardless of severity (including asymptomatic patients detected through public health screening). Reporting a case to this SECURE-Celiac registry should take approximately five minutes. With the collaboration of the entire celiac disease community, we will rapidly be able to define the impact of COVID-19 on patients with celiac disease and how factors such as age, comorbidities, and treatments impact COVID-19 outcomes.
This registry was created with the generous input and support provided by the group that has established a comparable registry for those with inflammatory bowel disease (SECURE-IBD: www.covidibd.org).
Key points:
- This is an international effort—we are counting on robust participation and collaboration.
- The project website, covidceliac.org, will provide regularly updated summary information about reported cases, including numbers of cases by country, number of cases by treatment, etc. so the entire celiac disease community has access to these data.
- The registry contains only de-identified data, in accordance with HIPAA Safe Harbor De-Identification standards.
- The Columbia University Institutional Review Board has approved the storage and analysis of de-identified data on this registry.
- Only laboratory-confirmed COVID-19 cases should be reported. Cases should be reported after a minimum of seven days or until sufficient time has passed to observe the disease course through resolution of acute illness or death.
PLEASE NOTE: Registry entry is for healthcare providers only; if you are a patient, we encourage you to direct your healthcare provider to covidceliac.org to report your case.
Through broad participation and collaboration, we will be able to answer pressing questions for patients with celiac disease and their caregivers about COVID-19 and celiac disease.
If you have any questions, please reach out to Dr. Benjamin Lebwohl at [email protected].
To share your own experience, complete the COVID-19 and Celiac Disease survey in the Celiac Disease Foundation’s iCureCeliac® patient registry. All celiac patients with or without COVID-19 infection are eligible to participate at icure.celiac.org. stry for People with Celiac Disease who are Diagnosed with Covid-19