About the Patient-Led Research Collaborative

We are a self-organized group of Long COVID patients working on patient-led research around the Long COVID experience. We are all researchers in relevant fields – participatory design, neuroscience, public policy, data collection and analysis, human-centered design, health activism – in addition to having intimate knowledge of COVID-19. Our first report, “What does COVID-19 Recovery Actually Look Like?”, was published on May 11th, 2020, and was the first report on Long COVID.

Our second, “Characterizing Long COVID in an International Cohort: 7 Months of Symptoms and Their Impact“, was published on December 27th, 2020, based on the survey below. The survey is still open for participation for future papers.

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.

Previous Surveys

COVID-19 Patient Experience Survey #2

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.

Our goal is to collect data on those with COVID-19 prolonged recoveries – a group that has so far been under studied – and distribute that information to both the general public and to medical professionals.

We were born out of the Body Politic Slack support group, and continue to work within that community. We also operate independently and with other patients, support groups, and organizations.

We are actively looking for funding, partnerships, and journalists to write about our work – please reach out to us at team@patientresearchcovid19.com