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Parkinson's Foundation PD GENEration Genetic Registry

RecruitingObservational study

Who can join

Ages 18 and older · All sexes

Full eligibility criteria
Inclusion Criteria:

* Study Population 1: PWP (open for recruitment)

  1. Meet Movement Disorder Society (MDS) Clinical Diagnostic Criteria for Parkinson's Disease: probable diagnosis.
  2. 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).
  3. 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.
  4. 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.

Exclusion Criteria:

1. 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.
2. Individuals who have received a blood transfusion within the past 3 months.
3. Individuals who have active hematologic malignancies such as lymphoma or leukemia.
4. Individuals who have had a bone marrow transplant within the past 5 years.
5. Under the age of 18

About the study

Development of a central repository for PD-related genomic data for future research.

What is being tested

Sponsor: Parkinson's Foundation · Participants: 35,382 · Started: Dec 20, 2020

Contact the study team

Official record on ClinicalTrials.gov — NCT04994015

Locations in the U.S.

ArizonaBarrow Neurological Institute, Phoenix
ArkansasUniversity of Arkansas, Fayetteville
CaliforniaUniversity of California San Diego (UCSD), La Jolla
University of California Los Angeles, Los Angeles
University of Southern California, Los Angeles
Stanford University, Redwood City
University of California San Francisco (UCSF), San Francisco
ColoradoUniversity of Colorado Anschutz, Aurora
ConnecticutUniversity of Connecticut, Farmington
FloridaParkinson's Disease & Movement Disorder Center of Boca Raton, Boca Raton
University of Florida, Gainesville
University of Miami, Miami
GeorgiaMorehouse College, Atlanta
HawaiiThe Queen's Health System, Honolulu
IllinoisRush University, Chicago
University of Chicago, Chicago
University of Illinois-Chicago, Chicago
Northwestern University, Evanston
IowaUniversity of Iowa, Iowa City
KansasUniversity of Kansas, Lawrence
KentuckyUniversity of Kentucky, Lexington
LouisianaLouisiana State University, Shreveport
MaineMaine Medical Center, Portland (Not yet recruiting)
MarylandJohns Hopkins, Baltimore
University of Maryland, College Park
MassachusettsBeth Israel Deaconess Medical Center (BIDMC), Boston
Massachusetts General Hospital (MGH), Boston
MinnesotaStruthers Parkinson's Center - HealthPartners Park Nicollet, Golden Valley
NevadaCleveland Clinic Lou Ruvo Center for Brain Health, Las Vegas
New MexicoUniversity of New Mexico, Albuquerque
New YorkColumbia University, New York
Mount Sinai, New York
University of Rochester Medical Center, Rochester
North CarolinaUniversity of North Carolina - Chapel Hill, Chapel Hill
OhioCase Western Reserve University, Cleveland
Cleveland Clinic, Cleveland
Ohio State University, Colombus
OregonOregon Health and Science University, Portland
PennsylvaniaThomas Jefferson University, Philadelphia
University of Pennsylvania, Philadelphia
Allegheny Health Network, Pittsburgh
South CarolinaMedical University of South Carolina, Charleston
TennesseeVanderbilt University, Nashville
TexasBaylor College of Medicine, Houston
The University of Texas Health Science Center at Houston, Houston
University of Texas at San Antonio, San Antonio
UtahIntermountain Health, Murray
VirginiaVirginia Commonwealth University, Richmond
WashingtonEvergreen Health, Kirkland
Inland Northwest Research, Spokane
WisconsinMedical College of Wisconsin, Milwaukee

Conditions

From ClinicalTrials.gov, data retrieved Sep 30, 2026. Each study sets its own eligibility; the study team decides who can join.