Collaborations
We are open to collaborations, particularly for those able to co-write grants and those with access to lab and imaging resources. Please see our guidelines for collaborating.
Research Priorities
The Patient-Led Research Collaborative has put out Recommendations for the National Research Action Plan on Long COVID.
We have also put out a list of Recommended Researchers: experts in Long Covid and post-viral illnesses who we recommend to work with for research collaborations, panels, and grant funding.
Patient-Led Research Scorecards
The Council of Medical Specialty Societies (CMSS) and Patient-Led Research Collaborative have developed a sustainable collaborative model of CER based on information from and the expertise of patient communities, researchers, funders, and clinical research organizations. This model takes the form of scorecards which serve to evaluate how effective a patient group and research partner collaboration will be at conducting truly patient-led research.
Long COVID survey questions
Our survey is available here for research use (with citation). Additional languages (French, Spanish, Arabic, Portuguese, Russian, Indonesian, Dutch, Italian) are available – please contact us. The survey include the below symptom list, as well as questions about symptom timecourses (over 7 months), triggers and relapses, impact on work, and many others. If you use our survey, or learn from it, please consider making a donation.