Parkinson's Foundation PD GENEration Genetic Registry

Recruiting now

Conditions studied: Parkinson's Disease

In brief

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

Key facts

Study ID: NCT04994015
Run by: Parkinson's Foundation
People needed: 25000
Starts: 2020-12-20
Expected to finish: 2026-07-01
Last updated by the study team: 2025-05-21

Who can join

Age: 18 and older. Sex: any. Healthy volunteers: not accepted.

You may qualify if…

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)
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.

You may not qualify if…

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

Where it is running

University of Alabama Birmingham — Birmingham, Alabama, United States (enrolling)
Barrow Neurological Institute — Phoenix, Arizona, United States (enrolling)
University of Arkansas — Fayetteville, Arkansas, United States (enrolling)
University of California San Diego (UCSD) — La Jolla, California, United States (enrolling)
University of California Los Angeles — Los Angeles, California, United States (enrolling)
University of California San Francisco (UCSF) — San Francisco, California, United States (enrolling)
University of Colorado Anschutz — Aurora, Colorado, United States (enrolling)
Hartford Healthcare — Hartford, Connecticut, United States (enrolling)
Aventura Neurology - Visionary Investigators Network — Aventura, Florida, United States (enrolling)
Parkinson's Disease & Movement Disorder Center of Boca Raton — Boca Raton, Florida, United States (enrolling)
University of Florida — Gainesville, Florida, United States (enrolling)
University of Miami — Miami, Florida, United States (enrolling)
Cleveland Clinic Weston — Weston, Florida, United States (enrolling)
Morehouse College — Atlanta, Georgia, United States (enrolling)
The Queen's Health System — Honolulu, Hawaii, United States (enrolling)
University of Illinois-Chicago — Chicago, Illinois, United States (enrolling)
Rush University — Chicago, Illinois, United States (enrolling)
University of Chicago — Chicago, Illinois, United States (enrolling)
Northwestern University — Evanston, Illinois, United States (enrolling)
Indiana University — Indianapolis, Indiana, United States (enrolling)
University of Iowa — Iowa City, Iowa, United States (enrolling)
University of Kansas — Lawrence, Kansas, United States (enrolling)
University of Kentucky — Lexington, Kentucky, United States (enrolling)
Louisiana State University — Shreveport, Louisiana, United States (enrolling)
Johns Hopkins — Baltimore, Maryland, United States (enrolling)

Full record on ClinicalTrials.gov

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