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.
Parkinson's Foundation PD GENEration Genetic Registry
At a glance
Conditions
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.
Study leadership
- 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
Who to contact
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Inclusion
What this trial measures
- 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.