Parkinson's Foundation PD GENEration Genetic Registry

This observational study, called the Parkinson's Foundation PD GENEration Genetic Registry, is looking for 25,000 people with Parkinson's disease (PD) to join. The study aims to create a central collection of genetic information related to PD for future research. You would undergo genetic testing for seven specific genes linked to Parkinson's disease (GBA, LRRK2, SNCA, VPS35, PRKN, PINK-1, PARK7). The study will also provide counseling about your genetic test results. The main goals are to understand how common these genetic changes are in people with Parkinson's and to educate participants about their genetic status. To be eligible, you must be at least 18 years old, have a probable diagnosis of Parkinson's disease, and be willing to have genetic testing and receive your results.

Study design
This is an observational study with a planned enrollment of 25,000 participants.
What's involved
You would undergo genetic testing and receive counseling about your genetic test results.
Compensation
Not stated in the trial record.
Follow-up
The primary goals are measured at 6 months.

AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.

NCT04994015

Parkinson's Foundation PD GENEration Genetic Registry

Recruiting
Not specifiedAges 18+Observational
Parkinson's Foundation
~35,382 participants
Updated 2026-09-08 on ClinicalTrials.gov
What's tested:Lab Assay for seven genetic variants for Parkinson's Disease

At a glance

Recruiting sites
56 of 70 listed sites are recruiting right now
RecruitingSuspended, closed, or not yet open
What they're measuring
Prevalence of Parkinson's related genetic mutations in an convenience cohort
Measured over 6 months
+1 more outcome measured
Parkinson's Disease

NCT04994015

Where you'd take part

This study runs at 70 sites. They're the same protocol — you choose where, and that choice sets who your contact draft is addressed to.

  • Allegheny Health Network

    Pittsburgh, Pennsylvaniastudy coordinator listed

    Recruiting

  • Barrow Neurological Institute

    Phoenix, Arizonastudy coordinator listed

    Recruiting

  • Baylor College of Medicine

    Houston, Texasstudy coordinator listed

    Recruiting

  • Beth Israel Deaconess Medical Center (BIDMC)

    Boston, Massachusettsstudy coordinator listed

    Recruiting

  • Case Western Reserve University

    Cleveland, Ohiostudy coordinator listed

    Recruiting

  • Chaim Sheba Medical Center

    Ramat Gan, Israelstudy coordinator listed

    Recruiting

  • Cleveland Clinic

    Cleveland, Ohiostudy coordinator listed

    Recruiting

  • Cleveland Clinic Lou Ruvo Center for Brain Health

    Las Vegas, Nevadastudy coordinator listed

    Recruiting

Sites open and close at different times, so the status above is per site — it can differ from the study's overall status.

  • James Beck, PhD · PRINCIPAL_INVESTIGATOR · Parkinson's Foundation
  • Roy N Alcalay, MS, MD · PRINCIPAL_INVESTIGATOR · Tel Aviv Sourasky Medical Center, Columbia University Irving Medical Center

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Eligibility criteria

Inclusion

Study Population 1: PWP (open for recruitment)
  • Prevalence of Parkinson's related genetic mutations in an convenience cohort6 months

    Identify people with Parkinson's who have genetic mutations to advance basic science and clinical research.

  • Educating people with Parkinson's of their genetic mutation status through genetic testing and counseling6 months

    People who are informed of their genetic status may be empowered to learn more about their disease and participant in clinical research.