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Parkinson's Foundation PD GENEration Genetic Registry

NCT04994015 · Parkinson's Foundation
In plain English

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About this study
The purpose of this study is to develop a central repository for PD-related genomic data by individuals who consent to deposit their data and bank their residual DNA obtained through clinical genetic testing for future research use.
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
Study design
Enrollment target: 35382 participants
Age groups: adult, older_adult
Timeline
Starts: 2020-12-20
Estimated completion: 2027-07-01
Last updated: 2026-09-08
Interventions
Device: Lab Assay for seven genetic variants for Parkinson's Disease
Primary outcomes
  • Prevalence of Parkinson's related genetic mutations in an convenience cohort (6 months)
  • Educating people with Parkinson's of their genetic mutation status through genetic testing and counseling (6 months)
Sponsor
Parkinson's Foundation · other
With: Indiana University, Fulgent Genetics, The Parkinson Study Group
Contacts & investigators
ContactKamalini Ghosh, MS · contact · kghosh@parkinson.org · 1-800-473-4636
InvestigatorJames Beck, PhD · principal_investigator, Parkinson's Foundation
InvestigatorRoy N Alcalay, MS, MD · principal_investigator, Tel Aviv Sourasky Medical Center, Columbia University Irving Medical Center
All locations (70)
University of Alabama BirminghamActive Not Recruiting
Birmingham, Alabama, United States
MD First ResearchTerminated
Chandler, Arizona, United States
Barrow Neurological InstituteRecruiting
Phoenix, Arizona, United States
University of ArkansasRecruiting
Fayetteville, Arkansas, United States
University of California San Diego (UCSD)Recruiting
La Jolla, California, United States
University of Southern CaliforniaRecruiting
Los Angeles, California, United States
University of California Los AngelesRecruiting
Los Angeles, California, United States
Stanford UniversityRecruiting
Redwood City, California, United States
University of California San Francisco (UCSF)Recruiting
San Francisco, California, United States
University of Colorado AnschutzRecruiting
Aurora, Colorado, United States
University of ConnecticutRecruiting
Farmington, Connecticut, United States
Hartford HealthcareActive Not Recruiting
Hartford, Connecticut, United States
Aventura Neurology - Visionary Investigators NetworkActive Not Recruiting
Aventura, Florida, United States
Parkinson's Disease & Movement Disorder Center of Boca RatonRecruiting
Boca Raton, Florida, United States
University of FloridaRecruiting
Gainesville, Florida, United States
University of MiamiRecruiting
Miami, Florida, United States
Cleveland Clinic WestonActive Not Recruiting
Weston, Florida, United States
Morehouse CollegeRecruiting
Atlanta, Georgia, United States
The Queen's Health SystemRecruiting
Honolulu, Hawaii, United States
University of Illinois-ChicagoRecruiting
Chicago, Illinois, United States
Rush UniversityRecruiting
Chicago, Illinois, United States
University of ChicagoRecruiting
Chicago, Illinois, United States
Northwestern UniversityRecruiting
Evanston, Illinois, United States
Indiana UniversityActive Not Recruiting
Indianapolis, Indiana, United States
University of IowaRecruiting
Iowa City, Iowa, United States
University of KansasRecruiting
Lawrence, Kansas, United States
University of KentuckyRecruiting
Lexington, Kentucky, United States
Louisiana State UniversityRecruiting
Shreveport, Louisiana, United States
Maine Medical CenterNot Yet Recruiting
Portland, Maine, United States
Johns HopkinsRecruiting
Baltimore, Maryland, United States
University of MarylandRecruiting
College Park, Maryland, United States
Massachusetts General Hospital (MGH)Recruiting
Boston, Massachusetts, United States
BMC Community HospitalActive Not Recruiting
Boston, Massachusetts, United States
Beth Israel Deaconess Medical Center (BIDMC)Recruiting
Boston, Massachusetts, United States
University of MichiganActive Not Recruiting
Ann Arbor, Michigan, United States
Struthers Parkinson's Center - HealthPartners Park NicolletRecruiting
Golden Valley, Minnesota, United States
Cleveland Clinic Lou Ruvo Center for Brain HealthRecruiting
Las Vegas, Nevada, United States
Rutgers UniversityActive Not Recruiting
New Brunswick, New Jersey, United States
University of New MexicoRecruiting
Albuquerque, New Mexico, United States
New York UniversityActive Not Recruiting
New York, New York, United States
Mount SinaiRecruiting
New York, New York, United States
Columbia UniversityRecruiting
New York, New York, United States
University of Rochester Medical CenterRecruiting
Rochester, New York, United States
University of North Carolina - Chapel HillRecruiting
Chapel Hill, North Carolina, United States
Atrium HealthActive Not Recruiting
Charlotte, North Carolina, United States
University of CincinnatiActive Not Recruiting
Cincinnati, Ohio, United States
Case Western Reserve UniversityRecruiting
Cleveland, Ohio, United States
Cleveland ClinicRecruiting
Cleveland, Ohio, United States
Ohio State UniversityRecruiting
Colombus, Ohio, United States
Oregon Health and Science UniversityRecruiting
Portland, Oregon, United States
University of PennsylvaniaRecruiting
Philadelphia, Pennsylvania, United States
Thomas Jefferson UniversityRecruiting
Philadelphia, Pennsylvania, United States
Allegheny Health NetworkRecruiting
Pittsburgh, Pennsylvania, United States
Medical University of South CarolinaRecruiting
Charleston, South Carolina, United States
Vanderbilt UniversityRecruiting
Nashville, Tennessee, United States
Baylor College of MedicineRecruiting
Houston, Texas, United States
The University of Texas Health Science Center at HoustonRecruiting
Houston, Texas, United States
University of Texas at San AntonioRecruiting
San Antonio, Texas, United States
Intermountain HealthRecruiting
Murray, Utah, United States
Virginia Commonwealth UniversityRecruiting
Richmond, Virginia, United States
Evergreen HealthRecruiting
Kirkland, Washington, United States
Inland Northwest ResearchRecruiting
Spokane, Washington, United States
Medical College of WisconsinRecruiting
Milwaukee, Wisconsin, United States
University of AlbertaRecruiting
Edmonton, Alberta, Canada
University of British ColumbiaRecruiting
Vancouver, British Columbia, Canada
Toronto Western HospitalRecruiting
Toronto, Ontario, Canada
McGill UniversityActive Not Recruiting
Montreal, Quebec, Canada
Shaare Zedek Medical CenterRecruiting
Jerusalem, Israel
Chaim Sheba Medical CenterRecruiting
Ramat Gan, Israel
Tel Aviv Sourasky Medical CenterRecruiting
Tel Aviv, Israel