Parkinson's Foundation PD GENEration Genetic Registry
- Conditions
- Parkinson's Disease
- Registration Number
- NCT04994015
- Lead Sponsor
- Parkinson's Foundation
- Brief Summary
Development of a central repository for PD-related genomic data for future research.
- Detailed Description
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.
Recruitment & Eligibility
- Status
- RECRUITING
- Sex
- All
- Target Recruitment
- 25000
-
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.
- 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
Study & Design
- Study Type
- OBSERVATIONAL
- Study Design
- Not specified
- Primary Outcome Measures
Name Time Method Educating people with Parkinson's of their genetic mutation status through genetic testing and counseling 6 months People who are informed of their genetic status may be empowered to learn more about their disease and participant in clinical research.
Prevalence of Parkinson's related genetic mutations in an convenience cohort 6 months Identify people with Parkinson's who have genetic mutations to advance basic science and clinical research.
- Secondary Outcome Measures
Name Time Method
Related Research Topics
Explore scientific publications, clinical data analysis, treatment approaches, and expert-compiled information related to the mechanisms and outcomes of this trial. Click any topic for comprehensive research insights.
Trial Locations
- Locations (56)
University of Alabama Birmingham
🇺🇸Birmingham, Alabama, United States
MD First Research
🇺🇸Chandler, Arizona, United States
Barrow Neurological Institute
🇺🇸Phoenix, Arizona, United States
University of Arkansas
🇺🇸Fayetteville, Arkansas, United States
University of California San Diego (UCSD)
🇺🇸La Jolla, California, United States
University of California Los Angeles
🇺🇸Los Angeles, California, United States
University of California San Francisco (UCSF)
🇺🇸San Francisco, California, United States
University of Colorado Anschutz
🇺🇸Aurora, Colorado, United States
Hartford Healthcare
🇺🇸Hartford, Connecticut, United States
Aventura Neurology - Visionary Investigators Network
🇺🇸Aventura, Florida, United States
Parkinson's Disease & Movement Disorder Center of Boca Raton
🇺🇸Boca Raton, Florida, United States
University of Florida
🇺🇸Gainesville, Florida, United States
University of Miami
🇺🇸Miami, Florida, United States
Cleveland Clinic Weston
🇺🇸Weston, Florida, United States
Morehouse College
🇺🇸Atlanta, Georgia, United States
The Queen's Health System
🇺🇸Honolulu, Hawaii, United States
University of Illinois-Chicago
🇺🇸Chicago, Illinois, United States
Rush University
🇺🇸Chicago, Illinois, United States
University of Chicago
🇺🇸Chicago, Illinois, United States
Northwestern University
🇺🇸Evanston, Illinois, United States
Indiana University
🇺🇸Indianapolis, Indiana, United States
University of Iowa
🇺🇸Iowa City, Iowa, United States
University of Kansas
🇺🇸Lawrence, Kansas, United States
University of Kentucky
🇺🇸Lexington, Kentucky, United States
Louisiana State University
🇺🇸Shreveport, Louisiana, United States
Johns Hopkins
🇺🇸Baltimore, Maryland, United States
University of Maryland
🇺🇸College Park, Maryland, United States
Massachusetts General Hospital (MGH)
🇺🇸Boston, Massachusetts, United States
BMC Community Hospital
🇺🇸Boston, Massachusetts, United States
Beth Israel Deaconess Medical Center (BIDMC)
🇺🇸Boston, Massachusetts, United States
Struthers Parkinson's Center - HealthPartners Park Nicollet
🇺🇸Golden Valley, Minnesota, United States
Rutgers University
🇺🇸New Brunswick, New Jersey, United States
University of New Mexico
🇺🇸Albuquerque, New Mexico, United States
New York University
🇺🇸New York, New York, United States
Mount Sinai
🇺🇸New York, New York, United States
Columbia University
🇺🇸New York, New York, United States
University of North Carolina - Chapel Hill
🇺🇸Chapel Hill, North Carolina, United States
Atrium Health
🇺🇸Charlotte, North Carolina, United States
University of Cincinnati
🇺🇸Cincinnati, Ohio, United States
Case Western Reserve University
🇺🇸Cleveland, Ohio, United States
Cleveland Clinic
🇺🇸Cleveland, Ohio, United States
Vanderbilt University
🇺🇸Nashville, Tennessee, United States
Baylor College of Medicine
🇺🇸Houston, Texas, United States
Intermountain Health
🇺🇸Murray, Utah, United States
Ohio State University
🇺🇸Columbus, Ohio, United States
Medical University of South Carolina
🇺🇸Charleston, South Carolina, United States
Virginia Commonwealth University
🇺🇸Richmond, Virginia, United States
Tel Aviv Sourasky Medical Center
🇮🇱Tel Aviv, Israel
Oregon Health and Science University
🇺🇸Portland, Oregon, United States
University of Pennsylvania
🇺🇸Philadelphia, Pennsylvania, United States
Thomas Jefferson University
🇺🇸Philadelphia, Pennsylvania, United States
University of Texas at San Antonio
🇺🇸San Antonio, Texas, United States
Evergreen Health
🇺🇸Kirkland, Washington, United States
Medical College of Wisconsin
🇺🇸Milwaukee, Wisconsin, United States
Inland Northwest Research
🇺🇸Spokane, Washington, United States
Toronto Western Hospital
🇨🇦Toronto, Ontario, Canada