Draft:Patient-Led Research Collaborative

  • Comment: Articles mostly seem to be by, not about, this group. Devonian Wombat (talk) 04:44, 22 May 2026 (UTC)


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

References

  1. ^ a b "Patient Led Research Collaborative – for Long COVID". patientresearchcovid19.com. Retrieved 2026-03-03.
  2. ^ a b 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. PMID 33987484.
  3. ^ a b 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 101019. doi:10.1016/j.eclinm.2021.101019. ISSN 2589-5370. PMC 8280690. PMID 34308300.
  4. ^ a b 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. PMID 36639608.
  5. ^ "Google Scholar". scholar.google.com. Retrieved 2026-03-03.
  6. ^ "Google Scholar". scholar.google.com. Retrieved 2026-03-03.
  7. ^ 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.
  8. ^ 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 1122673. doi:10.3389/fresc.2023.1122673. ISSN 2673-6861. PMC 10208411. PMID 37234076.
  9. ^ 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. PMID 39762640.
  10. ^ 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
  11. ^ 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 122970. doi:10.1016/j.lfs.2024.122970. ISSN 0024-3205. PMID 39142505.
  12. ^ 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 106083. doi:10.1016/j.ebiom.2025.106083. ISSN 2352-3964. PMC 12794070. PMID 41421320.
  13. ^ 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.
  14. ^ 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.
  15. ^ "Patient-Led Research (@[email protected])". Mastodon. 2025-12-26. Retrieved 2026-03-03.
  16. ^ 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.
  17. ^ "Google Scholar". scholar.google.com. Retrieved 2026-03-03.

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