Currently recruiting studies

Please see the chronic illness category first as multiple chronic illness are listed under it - Long COVID, post vacc, etc.

Chronic Illness

Patient Experiences Survey

• Please use the pre-filled link.
• Recruiting Long COVID, vx injured, ME/CFS, and anybody with a chronic illness.
• A follow up to the Treatment Outcomes Survey.

Yale LISTEN study, hosted on the Kindred Hugo Health platform

• Recruiting Long COVID and vx injured
• Enroll via https://www.kindred.hugo.health/research/listen-study
• Hugo Health has videos on its Youtube channel where you can see how they engage with chronic illness communities: https://www.youtube.com/@hugohealthkindred

COVID and Tinnitus Survey

• Recruiting Long COVID and vx injured
• https://illinoisahs.co1.qualtrics.com/jfe/form/SV_afTJflpRnk1Kdj8

(Upcoming?) MRI study for post-vx and Long COVID patients who have taken a MRI.

Long COVID

Fasting study - Jeffrey Novak PhD, Tom Bunker PhD

• Enrollment Form
• Youtube video

The Twitter user @organichemusic regularly runs surveys.

• https://twitter.com/organichemusic
• Her previous survey results are published at https://pharmd.substack.com/

Robert Gordon University - Informal survey on research priorities

• https://robertgordonuniversity.onlinesurveys.ac.uk/long-covid-research-priorities-2

COVID Vx Injury

UCSF PROVES survey

• May take 1 hour to complete. However, this survey takes less time to complete if you skip optional portions.

Identical Twin Registry

• If you have an identical twin, please register here. You can decide if you want to enter in your contact information so that researchers can reach out to you for recruitment.

(Upcoming) Genome-Wide Association Study

• Principal investigator: Bruce Carleton (The University of British Columbia).
• https://clinicaltrials.gov/ct2/show/NCT05212792
• Recruiting: Any patient who received COVID-19 vccnes and developed GBS, VITT/TTS, or myocarditis/pericarditis after vccnation

PSSD (for those on SSRIs or suffering post-SSRI syndromes) and related syndromes

Queen's research project.

• See Reddit thread.
• Join via the Qualtrics survey.

David Healy recruiting for 2023 CCM project (CCM is a test for small fiber neuropathy)

• See https://rxisk.org/pssd-patients-needed-for-ccm-investigation/

If you have 23andMe data, consider sending a copy to PSSD Lab's Genome Project.

See the subreddit r/PSSD for current information on PSSD studies that are recruiting. This thread will likely be incorporated into another post somewhere on that subreddit.

1- Report the Adverse Drug Reaction to your country's Pharmacovigilance Agency (you'll find it easily on Google). It is recommended that you sign with your full name and do not leave the report anonymous so that it will be given more consideration.

2- Fill in the RxISK report here: the data collected has already resulted in several publications.

3- To fill in a questionnaire on PSSD and be part of a possible sample of patients for future studies by Prof. Roberto C. Melcangi who works at the University of Milan, you can ask for the questionnaire at his email address: roberto.melcangi@unimi.it

4- German study on female PSSD from the University of Witten/Herdecke (German language required).

5- [2023!] Research questionnaire of the University of Rome Tor Vergata (ENDOSEX). Read here.

6- [2023!] Queen's University Sexual Health Research Lab questionnaire, see here.

7- The University of Iowa research questionnaire is still open for participation: https://redcap.link/PSSD. The first data have already been published in this paper.

Stuff That Works runs a survey with results that are posted online

• https://www.stuffthatworks.health/post-ssri-sexual-dysfunction-pssd/
• Discussion thread: https://pssdforum.org/viewtopic.php?t=4378

Aphantasia (unable to visualize imagery)

• https://www.reddit.com/r/PSSD/comments/142sbsg/aphantasia_survery_by_university_of_exeter_if_you/

Completed Studies

Long Covid & Post Vac Survey (University Hospital of Marburg)

Vccn injury surveys