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Challenges in defining Long COVID: Striking differences across literature, Electronic Health Records, and patient-reported information

By Halie M Rando, Tellen D Bennett, James Brian Byrd, Carolyn T Bramante, Tiffany J Callahan, Christopher G Chute, Hannah Davis, Rachel R Deer, Joel Gagnier, Farrukh M Koraishy, Feifan Liu, Julie A McMurry, Richard A Moffitt, Emily R Pfaff, Justin Reese, Rose Relevo, Peter N. Robinson, Joel Saltz, Anthony E Solomonides, Anupam A Sule, Umit Topaloglu, Melissa A Haendel

Posted 26 Mar 2021
medRxiv DOI: 10.1101/2021.03.20.21253896

Since late 2019, the novel coronavirus SARS-CoV-2 has introduced a wide array of health challenges globally. In addition to a complex acute presentation that can affect multiple organ systems, increasing evidence points to long-term sequelae being common and impactful. As the worldwide scientific community forges ahead with efforts to characterize a wide range of outcomes associated with SARS-CoV-2 infection, the proliferation of available data has made it clear that formal definitions are needed in order to design robust and consistent studies of Long COVID that consistently capture variation in long-term outcomes. In the present study, we investigate the definitions used in the literature published to date and compare them against data available from electronic health records and patient-reported information collected via surveys. Long COVID holds the potential to produce a second public health crisis on the heels of the pandemic. Proactive efforts to identify the characteristics of this heterogeneous condition are imperative for a rigorous scientific effort to investigate and mitigate this threat.

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