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asked if a similar effort was underway for rheumatology. Within a day, a group of fifteen rheumatologists and researchers coordinated through Twitter, then email, and eventually moved to Slack and formally established the C19-GRA. An initial step was establishing an online presence. A website, rheum-covid.org, and an organizational Twitter account, @rheum_covid, were established. A Steering Committee was formed for project management, policy, and governance. The goal of the physician-reported registry is to collect data on patients with rheumatic disease who have contracted COVID-19, identify risk factors for disease complications, and inform best practices. Physicians from across the globe can access the registry from our website and enter information about any patient with rheumatic disease and COVID-19 disease, whether they are hospitalized, seen in the clinic, or even through a virtual telehealth visit. For the development of the physician registry, we coordinated with a team at the University of California, San Francisco, to launch a REDCap-based, physician-entered registry that went live by March 24, 2020. REDCap is a browser-based, metadata-driven electronic data capture software and workflow methodology for designing clinical and translational research databases (8, 9). A parallel physician registry was also established for Europe by the European League Against Rheumatism (EULAR), which abides by the General Data Protection Regulation (GDPR), legislation that places additional protection of personal data in those living in Europe. The intent is for data from both registries to be shared and analyzed together. As of June 10, 2020, physicians from over 40 countries have contributed to both the Global and EULAR registries, with a combined total of more than 3,000 cases To have a first-hand understanding of the patient experience during the pandemic, the Patient Experience Survey was developed and launched on April 3, 2020 (10). This international, anonymous survey, is available in 9 languages and mirrors many data elements in the physician-reported registry. Any adult or parent of a child with a rheumatic disease is eligible to participate, whether or not they were diagnosed with COVID-19, by accessing the survey on our website. In addition to patient demographics and details about COVID-19 diagnosis, as applicable, the survey also collects data about mental and physical health, experiences with medication shortages, effects of the pandemic on employment and schooling, and other patient-reported outcomes. We used Qualtrics, a commercial survey platform that quickly and easily generates mobile responsive surveys and coordinated with teams at Boston Children’s Hospital, Beth Israel Deaconess Medical Center, and McMaster University for data analysis. To ensure participation by a wide range of people in the Patient Experience Survey, we partnered with patient support organizations that could encourage their members to participate. Over 100 patient organizations globally have pledged their support of the C19-GRA efforts and disseminated information about the Patient Experience Survey to their members. In the spirit of collaboration, we also planned to share aggregate data from members belonging to those organizations back to their respective organizations. To help recruit patients for our project, teams of patient partners helped to create a marketing plan, including custom graphics and ads. Patient partners were instrumental in developing emails that were sent to leaders of global patients organizations to engage them with the survey. The patient partners also created a Communication Tool Kit to guide patient organizations in
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