On March 11, the World Health Organization declared COVID-19 a pandemic. I was on holiday, standing on an idyllic, windswept beach in northern New Zealand, but I couldn’t focus on the rainbow. I had a pandemic on my mind. There were growing dark clouds in the world.
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Explore This IssueJune 2020
I was closely following the development of the pandemic on Twitter, the beloved social media choice of celebrities and world leaders. I was trying to gauge the scale of the problem and how it would affect me and my professional life as a rheumatologist.
Leonard H. Calabrese, DO, FACR, a rheumatologist from the Cleveland Clinic (@LCalabreseDO) tweeted about an effort by inflammatory bowel disease (IBD) doctors to establish a registry (SECURE-IBD) to capture information about outcomes of IBD patients affected by COVID-19. This led to a Twitter discussion among a group of rheumatologists about what a great initiative this was and whether anyone in rheumatology was doing this. One Zoom conference later, with Jinoos Yazdany, MD, MPH, from the University of California, San Francisco (UCSF, @JYazdanyMD) and her research group, and we had a small but growing team investigating how we could put a registry together.
Information about how rheumatic disease patients fared when they were infected with COVID-19 was absent. Previous coronavirus epidemics causing the severe acute respiratory syndrome-1 (SARS-1) and Middle East respiratory syndrome (MERS) had yielded scant information on outcomes in rheumatic disease patients. It was clear to those who were following the reports that this was going to be worse than any previous coronavirus epidemic. Our patients would be infected, and in all likelihood, some would die.
Many of the medications rheumatic disease patients commonly take have been shown in countless clinical trials to lead to an increased risk for serious infection. But discussions about how these same medications could be helpful to protect against the severe cytokine storm manifestations of COVID-19 were also taking place.
The urgency to address the information deficit was clear, and the enthusiasm to get it done was palpable. By March 15, three days after the discussions first started, 137 people were registered on an email list; the following day the Twitter feed for the effort (@rheum_covid) had 863 followers and was growing quickly. Teams were established to address required institutional review board applications, investigate and build the registry infrastructure and design the case collection form.