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More than 2,000 people have signed up for the general C19-GRA newsletter whereas the patient survey mailing list contains over 7,000 addresses The percentage of users that have opened each of the sent emails ranged from 54–64%. These open rates are better than the average email open rates for government and nonprofit emails, at 31% and 25%, respectively (11). To date, the C19-GRA has published nine articles in the peer-reviewed literature; six advocacy or editorial pieces (10, 12–16), and three papers with primary data about patient outcomes (17–19). A key finding has been that in people with rheumatic disease who develop COVID-19 moderate to high dose glucocorticoids were associated with a higher risk of hospitalization for COVID-19, while biologic therapies, NSAIDs and conventional disease modifying antirheumatic drugs, namely antimalarials like hydroxychloroquine, were not associated with a higher risk of hospitalization for COVID-19. There have been at least ten mentions in journal articles, and upwards of 60 mentions in rheumatology or mainstream media. Currently, the physician-reported registry data is planned to be used for multiple additional data analyses about key COVID-19 outcomes for people with rheumatic disease and for analysis of outcomes for patients with specific diseases. The Patient Experience Survey data is currently being analyzed to determine risk factors for the development of COVID-19 in adults and children with rheumatic disease, explore medication shortages, such as those that occurred with the use of antimalarials, and to understand the mental and physical toll that the pandemic has had on patients and their caregivers. Despite the challenges and social distancing brought on by the COVID-19 pandemic, the rheumatology community has been able to come together virtually, collect and analyze data, rapidly generate knowledge and disseminate it widely to improve the care of patients with rheumatic disease. Social media platforms have allowed patients, physicians, researchers, and other stakeholders to collaborate in an ambitious project to understand the impact of the COVID-19 pandemic in those with rheumatic diseases. In a few short months, the C19-GRA has grown from a tweet to an organization with over 400 members and governance policies, and which has produced 10 articles in peer-reviewed journals, as well as multiple messages through social media platforms that enabled patients and providers to get very early information about the outcomes of COVID-19 in people with immune-mediated diseases. As we continue to live through the COVID-19 pandemic, we will be forced to consider the long-term application of social media and online platforms to medical research. Our model can serve as a foundation for future global collaborative efforts to advance medical knowledge and rapidly return research results to patients and the physicians that care for them. Disclaimer: The views expressed here are those of the authors and participating members of the COVID-19 Global Rheumatology Alliance and do not necessarily represent the views of the American College of Rheumatology, the European League Against Rheumatism (EULAR), or any other organization. Conflict of Interest: J.S.H. is supported by grants from the Rheumatology Research Foundation and Childhood Arthritis and Rheumatology Research Alliance, and he has performed consulting for Novartis unrelated to this work (<$10,000). P.S. reports honorarium for doing social media for American College of Rheumatology journals (<$10,000). S.B. reports non-branded marketing campaigns for Novartis (<$10,000). J.W.L. is supported by a grant
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