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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
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

Full criteria on ClinicalTrials.gov

Sites (70)

Sites in registry order. Pick your city on the disease page to sort them by distance.

SiteCityCountrySite status
University of Alberta
Coordinator of this site? Confirm its status
EdmontonCanadaRecruiting
McGill University
Coordinator of this site? Confirm its status
MontrealCanadaActive, not recruiting
Toronto Western Hospital
Coordinator of this site? Confirm its status
TorontoCanadaRecruiting
University of British Columbia
Coordinator of this site? Confirm its status
VancouverCanadaRecruiting
Shaare Zedek Medical Center
Coordinator of this site? Confirm its status
JerusalemIsraelRecruiting
Chaim Sheba Medical Center
Coordinator of this site? Confirm its status
Ramat GanIsraelRecruiting
Tel-Aviv Sourasky Medical Center
Coordinator of this site? Confirm its status
Tel AvivIsraelRecruiting
University of New Mexico
Coordinator of this site? Confirm its status
AlbuquerqueUnited StatesRecruiting
University of Michigan
Coordinator of this site? Confirm its status
Ann ArborUnited StatesActive, not recruiting
Morehouse College
Coordinator of this site? Confirm its status
AtlantaUnited StatesRecruiting
University of Colorado Anschutz
Coordinator of this site? Confirm its status
AuroraUnited StatesRecruiting
Aventura Neurology - Visionary Investigators Network
Coordinator of this site? Confirm its status
AventuraUnited StatesActive, not recruiting
Johns Hopkins
Coordinator of this site? Confirm its status
BaltimoreUnited StatesRecruiting
University of Alabama Birmingham
Coordinator of this site? Confirm its status
BirminghamUnited StatesActive, not recruiting
Parkinson's Disease& Movement Disorder Center of Boca Raton
Coordinator of this site? Confirm its status
Boca RatonUnited StatesRecruiting
Beth Israel Deaconess Medical Center (BIDMC)
Coordinator of this site? Confirm its status
BostonUnited StatesRecruiting
BMC Community Hospital
Coordinator of this site? Confirm its status
BostonUnited StatesActive, not recruiting
Massachusetts General Hospital (MGH)
Coordinator of this site? Confirm its status
BostonUnited StatesRecruiting
MD First Research
Coordinator of this site? Confirm its status
ChandlerUnited StatesTerminated
University of North Carolina, Chapel Hill
Coordinator of this site? Confirm its status
Chapel HillUnited StatesRecruiting
Medical University of South Carolina
Coordinator of this site? Confirm its status
CharlestonUnited StatesRecruiting
Atrium Health
Coordinator of this site? Confirm its status
CharlotteUnited StatesActive, not recruiting
University of Chicago
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ChicagoUnited StatesRecruiting
RUSH University
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ChicagoUnited StatesRecruiting
University of Illinois Chicago
Coordinator of this site? Confirm its status
ChicagoUnited StatesRecruiting
University of Cincinnati
Coordinator of this site? Confirm its status
CincinnatiUnited StatesActive, not recruiting
Case Western Reserve University
Coordinator of this site? Confirm its status
ClevelandUnited StatesRecruiting
Cleveland Clinic
Coordinator of this site? Confirm its status
ClevelandUnited StatesRecruiting
University of Maryland
Coordinator of this site? Confirm its status
College ParkUnited StatesRecruiting
Ohio State University
Coordinator of this site? Confirm its status
ColombusUnited StatesRecruiting
Northwestern University
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EvanstonUnited StatesRecruiting
University of Connecticut
Coordinator of this site? Confirm its status
FarmingtonUnited StatesRecruiting
University of Arkansas
Coordinator of this site? Confirm its status
FayettevilleUnited StatesRecruiting
University of Florida
Coordinator of this site? Confirm its status
GainesvilleUnited StatesRecruiting
Struthers Parkinson's Center - HealthPartners Park Nicollet
Coordinator of this site? Confirm its status
Golden ValleyUnited StatesRecruiting
Hartford Healthcare
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HartfordUnited StatesActive, not recruiting
The Queen's Health System
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HonoluluUnited StatesRecruiting
Baylor College of Medicine
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HoustonUnited StatesRecruiting
The University of Texas Health Science Center at Houston
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HoustonUnited StatesRecruiting
Indiana University
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IndianapolisUnited StatesActive, not recruiting
University of Iowa
Coordinator of this site? Confirm its status
Iowa CityUnited StatesRecruiting
Evergreen Health
Coordinator of this site? Confirm its status
KirklandUnited StatesRecruiting
University of California San Diego (UCSD)
Coordinator of this site? Confirm its status
La JollaUnited StatesRecruiting
Cleveland Clinic Lou Ruvo Center for Brain Health
Coordinator of this site? Confirm its status
Las VegasUnited StatesRecruiting
University of Kansas
Coordinator of this site? Confirm its status
LawrenceUnited StatesRecruiting
University of Kentucky
Coordinator of this site? Confirm its status
LexingtonUnited StatesRecruiting
University of Southern California
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Los AngelesUnited StatesRecruiting
University of California, Los Angeles
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Los AngelesUnited StatesRecruiting
University of Miami
Coordinator of this site? Confirm its status
MiamiUnited StatesRecruiting
Medical College of Wisconsin
Coordinator of this site? Confirm its status
MilwaukeeUnited StatesRecruiting
Intermountain Health
Coordinator of this site? Confirm its status
MurrayUnited StatesRecruiting
Vanderbilt University
Coordinator of this site? Confirm its status
NashvilleUnited StatesRecruiting
Rutgers University
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New BrunswickUnited StatesActive, not recruiting
Columbia University
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New YorkUnited StatesRecruiting
Mount Sinai
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New YorkUnited StatesRecruiting
New York University
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New YorkUnited StatesActive, not recruiting
Thomas Jefferson University
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PhiladelphiaUnited StatesRecruiting
University of Pennsylvania
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PhiladelphiaUnited StatesRecruiting
Barrow Neurological Institute
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PhoenixUnited StatesRecruiting
Allegheny Health Network
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PittsburghUnited StatesRecruiting
Maine Medical Center
Coordinator of this site? Confirm its status
PortlandUnited StatesNot yet recruiting
Oregon Health and Science University
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PortlandUnited StatesRecruiting
Stanford University
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Redwood CityUnited StatesRecruiting
Virginia Commonwealth University
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RichmondUnited StatesRecruiting
University of Rochester Medical Center
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RochesterUnited StatesRecruiting
University of Texas at San Antonio
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San AntonioUnited StatesRecruiting
University of California, San Francisco (UCSF)
Coordinator of this site? Confirm its status
San FranciscoUnited StatesRecruiting
Louisiana State University
Coordinator of this site? Confirm its status
ShreveportUnited StatesRecruiting
Inland Northwest Research
Coordinator of this site? Confirm its status
SpokaneUnited StatesRecruiting
Cleveland Clinic-Weston
Coordinator of this site? Confirm its status
WestonUnited StatesActive, not recruiting

This page is information, not medical advice. Discuss any trial with your doctor.