About the Patient-Led Research Collaborative


The Patient-Led Research Collaborative is a group of Long Covid patients who are also researchers. We were born out of the Body Politic Slack support group and did the first research on Long Covid in April 2020. We are all researchers in relevant fields – biomedical research, participatory research, neuroscience, cognitive science, public policy, machine learning, human-centered design, health activism – in addition to having intimate knowledge of COVID-19.


Our mission is to facilitate patient-led and patient-involved research into Long Covid and associated conditions while following rigorous research methodology, and to advocate for policies that enable patients, particularly the most marginalized, to access care and live with dignity. We ground our work in the principles of disability justice and participatory research methods, and in the knowledge that those who experience an illness are best able to identify research questions and solutions.

We value open science and sharing our progress. See our Q&A and project transparency for more.

Our Work

We have published three papers and co-authored multiple others with collaborators from N3C, Yale, University of Toronto, Imperial College London, University College London, and others. We regularly meet with the CDC, WHO, NIH and other official medical associations and governments to inform their ongoing Long COVID responses and guidelines. We also consult for other researchers doing work on Long COVID and we are currently working with CMSS on a grant from PCORI to create a patient-led model for patient involvement in research.

Help us learn more about the Long COVID experience!

Latest Survey

Prolonged Recovery from COVID-19 – Impacts from vaccination

If you are at least 5 weeks past your final vaccine dose, please take our survey on vaccine experiences! This is open to everyone – to people with Long COVID, those who had COVID but not Long COVID, and those who never had COVID.

This survey has IRB approval through University College London.

Ongoing Surveys

COVID-19 Patient Experience Survey

We invite you to take part in our study if you:

  • Previously experienced or are currently experiencing symptoms consistent with COVID-19
  • Have a suspected or confirmed SARS-CoV-2 infection
  • Are over 18 years of age

Responda ao questionário (Português, Portuguese)
Participer à l’enquête (Française, French)
Tomar la encuesta (Español, Spanish)
De enquete invullen (Nederlands, Dutch)
Completa il questionario (Italiano, Italian)
Пройдите опрос (русский, Russian)
Ikuti survei (Bahasa Indonesia, Indonesian)
شارك في الدراسة! (Arabic, العربية)

This study is sponsored by University College London (UCL), London, UK.

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