Draft:Patient-Led Research Collaborative

The Patient-Led Research Collaborative is a collective of patient-researchers working on Long COVID and associated conditions.^[1] It was founded in April 2021 out of the Body Politic COVID-19 Support Group, by Gina Assaf, Hannah Davis, Hannah Wei, Athena Akrami, and Lisa McCorkell.^[2] As of March 2026, it is co-led by Gina Assaf, Hannah Davis, and Letícia Soares.^[1]

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The Patient-Led Research Collaborative published the first paper characterizing Long COVID in 2021,^[3] as well as a review article on Long COVID co-authored with Eric Topol.^[4] Both of these have amassed thousands of citations.^[5][6] It has published studies on mental health in Long COVID,^[7] menstrual health in Long COVID,^[8] the impact of Paxlovid on Long COVID,^[9] and reinfections.^[10] It has also published a number of op-eds on clinical trial design,^[11] endpoints,^[12][13] and the need to include patient-researchers in Long COVID research.^[2][14]

Long COVID researcher Michael Peluso (UCSF) has said: "I view the Patient-Led Research Collaborative as an essential part of the Long COVID and broader IACC research ecosystem because they bring something no other group can: the combination of lived experience and scientific expertise."^[15] Anthony Fauci, citing a paper by the Patient-Led Research Collaborative, has written: "Long COVID patient-activists, as with AIDS activists before them, have made significant contributions to the research efforts, informed by their lived experiences."^[16]