Rheumatology group launches registry to get COVID-19 data on rheumatic disease patients
SAN FRANCISCO – Today, the COVID-19 Global Rheumatology Alliance launched an international registry to help collect data that will be used to guide rheumatology clinicians and health professionals as they assess and treat rheumatic disease patients who are, or may become, infected with the SARS-CoV-2 virus that causes COVID-19. The registry will also evaluate the risk of infection in patients on immunosuppressive medications.
Currently, there is very little data on the outcomes among patients with rheumatic diseases and patients treated with rheumatology medications who contract COVID-19. This secure, de-identified, international registry will curate and disseminate results from the submitted cases to address these knowledge gaps.
Top goals of the registry include:
- Understanding the outcomes of patients with rheumatic conditions who develop COVID-19 and the influence of their comorbidities and medications on their outcomes.
- Understanding the influence of rheumatic medications, such as hydroxychloroquine, on the outcomes of patients who develop COVID-19.
- Rapidly performing systematic reviews of the currently available literature regarding rheumatic conditions and medications in patients who develop COVID-19 and updating them frequently while the pandemic is still active globally.
- Exploring the rheumatology patient experience during the COVID-19 pandemic.
“The COVID-19 Global Rheumatology Alliance recognized that patients with rheumatic diseases are often treated with immunosuppressive medications, which may influence the risk of contracting COVID-19 or influence disease severity,” said Paul Sufka, MD, a practicing rheumatologist in St. Paul, Minnesota and a member of the group’s steering committee. “We also recognized that a number of medications commonly used by rheumatologists, such as hydroxychloroquine, have been discussed as potential treatments of COVID-19, despite the lack of scientific evidence for their use in viral infections. Ultimately, we felt that building a worldwide registry was the best way to contribute reliable, evidence-based information and resources desperately needed in these rapidly evolving discussions.”
The COVID-19 Global Rheumatology Alliance is asking that clinicians use the registry to report any and all cases of COVID-19 in rheumatology patients, including those with mild or no symptoms. It is anticipated that the case report form will take five to 10 minutes to complete and no protected health information is requested.
The registry has received expedited approval by the University of California San Francisco’s International Review Board, and all relevant information from submitted cases will be used to provide updates to the global rheumatology community at rheum-covid.org
COVID-19 Global Rheumatology Alliance
Established March 2020 in response to the COVID-19 pandemic, the COVID-19 Global Rheumatology Alliance consists of approximately 100 international medical societies, academic institutions, patient groups and pharmaceutical organizations representing over 300 rheumatologists, health professionals and patients. The group is led by an eight-member steering committee of academic and community rheumatologists. The international registry is a secure, de-identified, case reporting registry that will curate and disseminate results to address knowledge gaps regarding patients with rheumatic diseases and patients using immunosuppressive medications. For more information, visit rheum-covid.org or follow on Twitter at
Paul Sufka, MD