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]
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]
Main Publications
- "Characterizing long COVID in an international cohort: 7 months of symptoms and their impact" in eClinical Medicine (2021)[3]: the first paper to characterize Long COVID.
- "Long COVID: major findings, mechanisms, and recommendations" in Nature Reviews Microbiology (2023)[4]: the most cited paper on Long COVID according to Google Scholar.[17]
References
- ↑ 1.0 1.1 "Patient Led Research Collaborative – for Long COVID". patientresearchcovid19.com. Retrieved 2026-03-03.
- ↑ 2.0 2.1 McCorkell, Lisa; S Assaf, Gina; E Davis, Hannah; Wei, Hannah; Akrami, Athena (2021). "Patient-Led Research Collaborative: embedding patients in the Long COVID narrative". Pain Reports. 6 (1): e913. doi:10.1097/PR9.0000000000000913. ISSN 2471-2531. PMC 8112577 Check
|pmc=value (help). PMID 33987484 Check|pmid=value (help). - ↑ 3.0 3.1 Davis, Hannah E.; Assaf, Gina S.; McCorkell, Lisa; Wei, Hannah; Low, Ryan J.; Re'em, Yochai; Redfield, Signe; Austin, Jared P.; Akrami, Athena (August 2021). "Characterizing long COVID in an international cohort: 7 months of symptoms and their impact". eClinicalMedicine. 38. doi:10.1016/j.eclinm.2021.101019. ISSN 2589-5370. PMC 8280690 Check
|pmc=value (help). PMID 34308300 Check|pmid=value (help). Unknown parameter|article-number=ignored (help) - ↑ 4.0 4.1 Davis, Hannah E.; McCorkell, Lisa; Vogel, Julia Moore; Topol, Eric J. (March 2023). "Long COVID: major findings, mechanisms and recommendations". Nature Reviews. Microbiology. 21 (3): 133–146. doi:10.1038/s41579-022-00846-2. ISSN 1740-1534. PMC 9839201 Check
|pmc=value (help). PMID 36639608 Check|pmid=value (help). - ↑ "Google Scholar". scholar.google.com. Retrieved 2026-03-03.
- ↑ "Google Scholar". scholar.google.com. Retrieved 2026-03-03.
- ↑ Re’em, Yochai; Stelson, Elisabeth A.; Davis, Hannah E.; McCorkell, Lisa; Wei, Hannah; Assaf, Gina; Akrami, Athena (May 2023). "Factors associated with psychiatric outcomes and coping in Long COVID". Nature Mental Health. 1 (5): 361–372. doi:10.1038/s44220-023-00064-6. ISSN 2731-6076.
- ↑ Pollack, Beth; von Saltza, Emelia; McCorkell, Lisa; Santos, Lucia; Hultman, Ashley; Cohen, Alison K.; Soares, Letícia (2023-04-28). "Female reproductive health impacts of Long COVID and associated illnesses including ME/CFS, POTS, and connective tissue disorders: a literature review". Frontiers in Rehabilitation Sciences. 4. doi:10.3389/fresc.2023.1122673. ISSN 2673-6861. PMC 10208411 Check
|pmc=value (help). PMID 37234076 Check|pmid=value (help). Unknown parameter|article-number=ignored (help) - ↑ Cohen, Alison K.; Jaudon, Toni Wall; Schurman, Eric M.; Kava, Lisa; Vogel, Julia Moore; Haas-Godsil, Julia; Lewis, Daniel; Crausman, Samantha; Leslie, Kate; Bligh, Siobhan Christine; Lizars, Gillian; Davids, J. D.; Sran, Saniya; Peluso, Michael; McCorkell, Lisa (2025-01-06). "Impact of extended-course oral nirmatrelvir/ritonavir in established Long COVID: a case series". Communications Medicine. 4 (1): 261. doi:10.1038/s43856-024-00668-8. ISSN 2730-664X. PMC 11704346 Check
|pmc=value (help). PMID 39762640 Check|pmid=value (help). - ↑ Soares, Letícia; Assaf, Gina; McCorkell, Lisa; Davis, Hannah; Cohen, Alison K.; Moen, Janna K.; Shoemaker, Lauren G.; Liu, Leonid; Lewis, Daniel S. (2024-09-24), Long COVID and associated outcomes following COVID-19 reinfections: Insights from an International Patient-Led Survey, doi:10.21203/rs.3.rs-4909082/v1, retrieved 2026-03-03
- ↑ Vogel, Julia Moore; Pollack, Beth; Spier, Ezra; McCorkell, Lisa; Jaudon, Toni Wall; Fitzgerald, Megan; Davis, Hannah; Cohen, Alison K. (2024-10-15). "Designing and optimizing clinical trials for long COVID". Life Sciences. 355. doi:10.1016/j.lfs.2024.122970. ISSN 0024-3205. PMID 39142505 Check
|pmid=value (help). Unknown parameter|article-number=ignored (help) - ↑ Soares, Letícia; Davis, Hannah; Spier, Ezra; Walker, Tiffany; Davenport, Todd; Putrino, David; Peluso, Michael; Vogel, Julia Moore (January 2026). "Recommended long COVID outcome measures and their implications for clinical trial design, with a focus on post-exertional malaise". eBioMedicine. 123. doi:10.1016/j.ebiom.2025.106083. ISSN 2352-3964. PMC 12794070 Check
|pmc=value (help). PMID 41421320 Check|pmid=value (help). Unknown parameter|article-number=ignored (help) - ↑ Goxhaj, Lara; McCorkell, Lisa; Rhijn-Brouwer, Femke van; Soares, Letícia; Vogel, Julia Moore; Canson, Chloé de (2026-01-01). "Negative results in long COVID clinical trials: choosing outcome measures for a heterogeneous disease". The Lancet Infectious Diseases. 26 (1): 13–15. doi:10.1016/S1473-3099(25)00665-6. ISSN 1473-3099. PMID 41213281 Check
|pmid=value (help). - ↑ Fitzgerald, Megan L.; Cohen, Alison K.; Jaudon, Toni Wall; Vogel, Julia Moore; Koppes, Abigail N.; Santos, Lucia; Robles, Rachel; Lin, Jerry; Davids, J.D.; McWilliams, Chris; Redfield, Signe; Banks, Kathleen P.; Richardson, Maria; Tindle Akintonwa, Teresa T.; Pollack, Beth (October 2024). "A call from patient-researchers to advance research on long COVID". Cell. 187 (20): 5490–5496. doi:10.1016/j.cell.2024.09.011. ISSN 0092-8674.
- ↑ "Patient-Led Research (@[email protected])". Mastodon. 2025-12-26. Retrieved 2026-03-03.
- ↑ Fauci, Anthony S; Folkers, Gregory K (2025-06-04). "HIV/AIDS and COVID-19: Shared Lessons From 2 Pandemics". Clinical Infectious Diseases. 80 (5): 1074–1079. doi:10.1093/cid/ciae585. ISSN 1058-4838. PMID 39593235 Check
|pmid=value (help). - ↑ "Google Scholar". scholar.google.com. Retrieved 2026-03-03.
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