NCT04994015Recruiting
Parkinson's Foundation PD GENEration Genetic Registry
Source: ClinicalTrials.gov · Last updated 8 Sept 2026
Brief summary (registry, in English)
Development of a central repository for PD-related genomic data for future research.
- Status (registry)
- Recruiting
- Study type
- Observational
- Enrollment
- 35382 (estimated)
- First submitted
- 29 Jul 2021
- Start date
- Dec 2020
- Primary completion date
- Jul 2027
- Lead sponsor
- Parkinson's Foundation
- Diseases
- Parkinson disease
- NCT number
- NCT04994015
What you commit to
- Study type: Observational
- Planned participants: 35382
- From Dec 2020 to the primary completion date, Jul 2027
- 70 sites in 3 countries
- Visits and tests: ask the trial team, the registry does not list them
Built from the registry fields of ClinicalTrials.gov. It describes the study, not your situation.
Who cannot take part
Copied verbatim from ClinicalTrials.gov and grouped by topic. Only the trial team decides who can take part.
Prior treatment
- Individuals who have received a blood transfusion within the past 3 months.
- Individuals who have had a bone marrow transplant within the past 5 years.
Other illness
- Diagnosis of an atypical parkinsonian disorder (i.e., multiple system atrophy, progressive supranuclear palsy, dementia with Lewy bodies, corticobasal syndrome), including that due to medications, metabolic disorders, encephalitis, cerebrovascular disease, or normal pressure hydrocephalus.
- Individuals who have active hematologic malignancies such as lymphoma or leukemia.
Age
- Under the age of 18
Who the study is looking for
- Study Population 1: PWP (open for recruitment)
- Meet Movement Disorder Society (MDS) Clinical Diagnostic Criteria for Parkinson's Disease: probable diagnosis.
- Willingness to undergo genetic testing, and choose to be informed of genetic testing results for GBA, LRRK2 and 5 additional PD related genes (SNCA, VPS35, PRKN, PINK-1, PARK7).
- Capacity to give full informed consent in writing or electronically, and have read and signed the informed consent forms (ICFs) based on site clinician's determination.
- Able to perform study activities (including completion of either online, in-person or paper surveys).
- Study Population 2: People at risk of developing PD (not open for recruitment)
- 1\. Family members of Study Population 1 may be invited to participate in the study if confirmatory genetic testing is deemed necessary by the genetic testing laboratory.
Age in the registry: 18 years to - · Sex: All · Does not accept healthy volunteers
Sites (70)
Sites in registry order. Pick your city on the disease page to sort them by distance.
| Site | City | Country | Site status |
|---|---|---|---|
| University of Alberta Coordinator of this site? Confirm its status | Edmonton | Canada | Recruiting |
| McGill University Coordinator of this site? Confirm its status | Montreal | Canada | Active, not recruiting |
| Toronto Western Hospital Coordinator of this site? Confirm its status | Toronto | Canada | Recruiting |
| University of British Columbia Coordinator of this site? Confirm its status | Vancouver | Canada | Recruiting |
| Shaare Zedek Medical Center Coordinator of this site? Confirm its status | Jerusalem | Israel | Recruiting |
| Chaim Sheba Medical Center Coordinator of this site? Confirm its status | Ramat Gan | Israel | Recruiting |
| Tel-Aviv Sourasky Medical Center Coordinator of this site? Confirm its status | Tel Aviv | Israel | Recruiting |
| University of New Mexico Coordinator of this site? Confirm its status | Albuquerque | United States | Recruiting |
| University of Michigan Coordinator of this site? Confirm its status | Ann Arbor | United States | Active, not recruiting |
| Morehouse College Coordinator of this site? Confirm its status | Atlanta | United States | Recruiting |
| University of Colorado Anschutz Coordinator of this site? Confirm its status | Aurora | United States | Recruiting |
| Aventura Neurology - Visionary Investigators Network Coordinator of this site? Confirm its status | Aventura | United States | Active, not recruiting |
| Johns Hopkins Coordinator of this site? Confirm its status | Baltimore | United States | Recruiting |
| University of Alabama Birmingham Coordinator of this site? Confirm its status | Birmingham | United States | Active, not recruiting |
| Parkinson's Disease& Movement Disorder Center of Boca Raton Coordinator of this site? Confirm its status | Boca Raton | United States | Recruiting |
| Beth Israel Deaconess Medical Center (BIDMC) Coordinator of this site? Confirm its status | Boston | United States | Recruiting |
| BMC Community Hospital Coordinator of this site? Confirm its status | Boston | United States | Active, not recruiting |
| Massachusetts General Hospital (MGH) Coordinator of this site? Confirm its status | Boston | United States | Recruiting |
| MD First Research Coordinator of this site? Confirm its status | Chandler | United States | Terminated |
| University of North Carolina, Chapel Hill Coordinator of this site? Confirm its status | Chapel Hill | United States | Recruiting |
| Medical University of South Carolina Coordinator of this site? Confirm its status | Charleston | United States | Recruiting |
| Atrium Health Coordinator of this site? Confirm its status | Charlotte | United States | Active, not recruiting |
| University of Chicago Coordinator of this site? Confirm its status | Chicago | United States | Recruiting |
| RUSH University Coordinator of this site? Confirm its status | Chicago | United States | Recruiting |
| University of Illinois Chicago Coordinator of this site? Confirm its status | Chicago | United States | Recruiting |
| University of Cincinnati Coordinator of this site? Confirm its status | Cincinnati | United States | Active, not recruiting |
| Case Western Reserve University Coordinator of this site? Confirm its status | Cleveland | United States | Recruiting |
| Cleveland Clinic Coordinator of this site? Confirm its status | Cleveland | United States | Recruiting |
| University of Maryland Coordinator of this site? Confirm its status | College Park | United States | Recruiting |
| Ohio State University Coordinator of this site? Confirm its status | Colombus | United States | Recruiting |
| Northwestern University Coordinator of this site? Confirm its status | Evanston | United States | Recruiting |
| University of Connecticut Coordinator of this site? Confirm its status | Farmington | United States | Recruiting |
| University of Arkansas Coordinator of this site? Confirm its status | Fayetteville | United States | Recruiting |
| University of Florida Coordinator of this site? Confirm its status | Gainesville | United States | Recruiting |
| Struthers Parkinson's Center - HealthPartners Park Nicollet Coordinator of this site? Confirm its status | Golden Valley | United States | Recruiting |
| Hartford Healthcare Coordinator of this site? Confirm its status | Hartford | United States | Active, not recruiting |
| The Queen's Health System Coordinator of this site? Confirm its status | Honolulu | United States | Recruiting |
| Baylor College of Medicine Coordinator of this site? Confirm its status | Houston | United States | Recruiting |
| The University of Texas Health Science Center at Houston Coordinator of this site? Confirm its status | Houston | United States | Recruiting |
| Indiana University Coordinator of this site? Confirm its status | Indianapolis | United States | Active, not recruiting |
| University of Iowa Coordinator of this site? Confirm its status | Iowa City | United States | Recruiting |
| Evergreen Health Coordinator of this site? Confirm its status | Kirkland | United States | Recruiting |
| University of California San Diego (UCSD) Coordinator of this site? Confirm its status | La Jolla | United States | Recruiting |
| Cleveland Clinic Lou Ruvo Center for Brain Health Coordinator of this site? Confirm its status | Las Vegas | United States | Recruiting |
| University of Kansas Coordinator of this site? Confirm its status | Lawrence | United States | Recruiting |
| University of Kentucky Coordinator of this site? Confirm its status | Lexington | United States | Recruiting |
| University of Southern California Coordinator of this site? Confirm its status | Los Angeles | United States | Recruiting |
| University of California, Los Angeles Coordinator of this site? Confirm its status | Los Angeles | United States | Recruiting |
| University of Miami Coordinator of this site? Confirm its status | Miami | United States | Recruiting |
| Medical College of Wisconsin Coordinator of this site? Confirm its status | Milwaukee | United States | Recruiting |
| Intermountain Health Coordinator of this site? Confirm its status | Murray | United States | Recruiting |
| Vanderbilt University Coordinator of this site? Confirm its status | Nashville | United States | Recruiting |
| Rutgers University Coordinator of this site? Confirm its status | New Brunswick | United States | Active, not recruiting |
| Columbia University Coordinator of this site? Confirm its status | New York | United States | Recruiting |
| Mount Sinai Coordinator of this site? Confirm its status | New York | United States | Recruiting |
| New York University Coordinator of this site? Confirm its status | New York | United States | Active, not recruiting |
| Thomas Jefferson University Coordinator of this site? Confirm its status | Philadelphia | United States | Recruiting |
| University of Pennsylvania Coordinator of this site? Confirm its status | Philadelphia | United States | Recruiting |
| Barrow Neurological Institute Coordinator of this site? Confirm its status | Phoenix | United States | Recruiting |
| Allegheny Health Network Coordinator of this site? Confirm its status | Pittsburgh | United States | Recruiting |
| Maine Medical Center Coordinator of this site? Confirm its status | Portland | United States | Not yet recruiting |
| Oregon Health and Science University Coordinator of this site? Confirm its status | Portland | United States | Recruiting |
| Stanford University Coordinator of this site? Confirm its status | Redwood City | United States | Recruiting |
| Virginia Commonwealth University Coordinator of this site? Confirm its status | Richmond | United States | Recruiting |
| University of Rochester Medical Center Coordinator of this site? Confirm its status | Rochester | United States | Recruiting |
| University of Texas at San Antonio Coordinator of this site? Confirm its status | San Antonio | United States | Recruiting |
| University of California, San Francisco (UCSF) Coordinator of this site? Confirm its status | San Francisco | United States | Recruiting |
| Louisiana State University Coordinator of this site? Confirm its status | Shreveport | United States | Recruiting |
| Inland Northwest Research Coordinator of this site? Confirm its status | Spokane | United States | Recruiting |
| Cleveland Clinic-Weston Coordinator of this site? Confirm its status | Weston | United States | Active, not recruiting |
This page is information, not medical advice. Discuss any trial with your doctor.