Currently recruiting studies: Difference between revisions
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Patient Experiences Survey | Patient Experiences Survey | ||
* | * Enroll via [https://docs.google.com/forms/d/e/1FAIpQLSchmUvj90M8dJdSyUhQcEboBjCa-Sw9BDbY5msC6H7muBJXYw/viewform?usp=pp_url&entry.1840324711=Long+Haul+Wiki+list+of+currently+recruiting+studies this link]. | ||
* Recruiting Long COVID, vx injured, ME/CFS | * Recruiting Long COVID, vx injured, ME/CFS. | ||
* | * Interim results have been posted at https://youtu.be/IfeEIWorozg?si=cXkWIKCrq8LaXGRR. See the video description for a link to the slides. | ||
Yale LISTEN study, hosted on the Kindred Hugo Health platform | Yale LISTEN study, hosted on the Kindred Hugo Health platform | ||
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== Long COVID == | == Long COVID == | ||
CURE ID | |||
* Survey on treatments for Long COVID | |||
* https://cure.ncats.io/ | |||
WUSTL fluvoxamine study | |||
* Post-COVID, 25 years or older, continue to have problems with memory, attention, and concentration | |||
* Currently recruiting only Missouri and Illinois residents (U.S.) | |||
* https://imgur.com/a/T15Xppm | |||
Arizona study | |||
* $250 for participants | |||
* https://cndlifesciences.com/lccsstudy/ | |||
Fasting study - Jeffrey Novak PhD, Tom Bunker PhD | Fasting study - Jeffrey Novak PhD, Tom Bunker PhD | ||
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* This research study will test whether 15 days of the study drug Paxlovid, compared with placebo, can improve the health of people living with Long COVID. | * This research study will test whether 15 days of the study drug Paxlovid, compared with placebo, can improve the health of people living with Long COVID. | ||
* Funded by Pfizer. Pfizer was involved in the research design. | * Funded by Pfizer. Pfizer was involved in the research design. | ||
* Please note that Stanford stopped a similar study looking at Paxlovid on LC. See https://www.medpagetoday.com/special-reports/exclusives/105295 | |||
* https://medicine.yale.edu/cii/research/paxlc-study/ | * https://medicine.yale.edu/cii/research/paxlc-study/ | ||
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* https://www.reddit.com/r/covidlonghaulers/comments/14r780w/new_longcovid_studies_in_germany/ | * https://www.reddit.com/r/covidlonghaulers/comments/14r780w/new_longcovid_studies_in_germany/ | ||
( | (Canada) RECLAIM | ||
* https://www.reclaimtrial.ca/ | * https://www.reclaimtrial.ca/ | ||
* Based in Canada. | * Based in Canada. | ||
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== PSSD (for those on SSRIs or suffering post-SSRI syndromes) and related syndromes == | == PSSD (for those on SSRIs or suffering post-SSRI syndromes) and related syndromes == | ||
Database of research participants (SIDEFXHUB) | |||
* Sign up for the registry so that researchers can more easily recruit participants | |||
* https://reddit.com/r/PSSD/comments/1dtmmw0/new_database_to_participate_in_pssd_research/ | |||
Queen's research project. | Queen's research project. | ||
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David Healy recruiting for 2023 CCM project (CCM is a test for small fiber neuropathy) | David Healy recruiting for 2023 CCM project (CCM is a test for small fiber neuropathy) | ||
* https://www.reddit.com/r/PSSD/comments/1ag9s91/pssd_sufferers_needed_for_ukbased_study/ | |||
* See https://rxisk.org/pssd-patients-needed-for-ccm-investigation/ | * See https://rxisk.org/pssd-patients-needed-for-ccm-investigation/ | ||
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* https://www.decodeme.org.uk/portal/ | * https://www.decodeme.org.uk/portal/ | ||
* The researchers only need a saliva sample and completed questionnaire. | * The researchers only need a saliva sample and completed questionnaire. | ||
Mount Sinai study | |||
* Recruiting those with ME diagnosis prior to 2020. New York area. | |||
* https://twitter.com/PutrinoLab/status/1690013972135604225 | |||
= Completed Studies = | = Completed Studies = | ||
Latest revision as of 15:44, 3 July 2024
Please see the chronic illness category first as multiple chronic illness are listed under it - Long COVID, post vacc, etc.
Chronic Illness[edit]
Patient Experiences Survey
- Enroll via this link.
- Recruiting Long COVID, vx injured, ME/CFS.
- Interim results have been posted at https://youtu.be/IfeEIWorozg?si=cXkWIKCrq8LaXGRR. See the video description for a link to the slides.
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
- Note: Yale researchers have not published the results of NCT04895189, which studied the effect of vaccinations on unvaccinated Long COVID patients. Harlan Krumholz is currently running a Pfizer-funded study on Paxlovid.
- 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
MEAction Chronic Illness Survey Adventure
- Recruiting ME/CFS, Long COVID, POTS, hEDS, and MCAS
- Lengthy series of surveys. However, it can be taken in parts and Qualtrics will save your progress once you hit next and advance to the next sub-section/portion of a survey.
- https://www.meaction.net/epi/
PLRC Reinfections Study
- Recruiting everybody, including healthy people. "Everyone worldwide is welcome to take our survey, whether you have had COVID-19 once, multiple times, or have not yet had it. If you are under 18, an adult caregiver must complete the survey on your behalf."
- https://patientresearchcovid19.com/reinfections-study/
- Results from previous surveys (plus additional publications): https://patientresearchcovid19.com/publication/
- Note: Their previous survey on vaccine effects on Long COVID patients has yet to be published. Nonetheless, many of the PLRC group's surveys have been published.
- More publications here: https://patientresearchcovid19.com/projects/patient-generated-research-hypotheses/
Stanford BH4 deficiency study
- Recruiting ME/CFS and Long COVID patients in the United States.
- Researchers will send test kits through the mail, plus a $10 Amazon gift card.
- Explainer video: https://share.descript.com/view/tkNnNeDKBIk
- Enrollment info: https://studypages.com/s/study-to-investigate-the-potential-role-of-tetrahydrobiopterin-bh4-deficiency-in-mecfs-and-long-covid-525299/
Long COVID[edit]
CURE ID
- Survey on treatments for Long COVID
- https://cure.ncats.io/
WUSTL fluvoxamine study
- Post-COVID, 25 years or older, continue to have problems with memory, attention, and concentration
- Currently recruiting only Missouri and Illinois residents (U.S.)
- https://imgur.com/a/T15Xppm
Arizona study
- $250 for participants
- https://cndlifesciences.com/lccsstudy/
Fasting study - Jeffrey Novak PhD, Tom Bunker PhD
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
Yale Paxlovid study (PAX LC)
- This research study will test whether 15 days of the study drug Paxlovid, compared with placebo, can improve the health of people living with Long COVID.
- Funded by Pfizer. Pfizer was involved in the research design.
- Please note that Stanford stopped a similar study looking at Paxlovid on LC. See https://www.medpagetoday.com/special-reports/exclusives/105295
- https://medicine.yale.edu/cii/research/paxlc-study/
Ivabradine for Long-Term Effects of COVID-19 With POTS Cohort (COVIVA)
- https://classic.clinicaltrials.gov/ct2/show/NCT05481177
- Trial site is in Bethesda, Maryland, United States
- Contact: Roshila Mohammed, MBBS (301) 318-6024 clinical.research.unit.53-ggg@usuhs.ed
DecodeME - recruiting LC patients who developed ME/CFS following COVID. See the ME/CFS section.
(Norway) HBOT study
- You probably need to live in Oslo Norway to receive HBOT.
- https://clinicaltrials.gov/study/NCT04842448
(Germany) University of Basel Fampridine study
- Must speak German / Gute Deutschkenntnisse (Muttersprache oder fliessende Verständigung).
- https://mcn.unibas.ch/de/laufende-studien/famc/
- Falls Sie an einer Studienteilnahme interessiert sind oder weitere Informationen wünschen, kontaktieren Sie uns bitte per folgender E-Mail: studieninfo-klifo-biomedizin@unibas.ch
(Germany) List of LC studies in Germany
(Canada) RECLAIM
- https://www.reclaimtrial.ca/
- Based in Canada.
- Studying lingering side effects of COVID.
- May be recruiting post-vax patients (?).
COVID Vx Injury[edit]
- 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
[edit]
Database of research participants (SIDEFXHUB)
- Sign up for the registry so that researchers can more easily recruit participants
- https://reddit.com/r/PSSD/comments/1dtmmw0/new_database_to_participate_in_pssd_research/
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)
- https://www.reddit.com/r/PSSD/comments/1ag9s91/pssd_sufferers_needed_for_ukbased_study/
- 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)[edit]
ME/CFS[edit]
(UK only) DecodeME - Genetics (GWAS) study for ME/CFS, recruits Long COVID patients who developed ME/CFS following COVID
- https://www.decodeme.org.uk/portal/
- The researchers only need a saliva sample and completed questionnaire.
Mount Sinai study
- Recruiting those with ME diagnosis prior to 2020. New York area.
- https://twitter.com/PutrinoLab/status/1690013972135604225
Completed Studies[edit]
List of Vccn injury surveys
Long Covid & Post Vac Survey (University Hospital of Marburg)