Parkinson's Foundation PD GENEration Genetic Registry
Purpose
Development of a central repository for PD-related genomic data for future research.
Condition
- Parkinson's Disease
Eligibility
- Eligible Ages
- Over 18 Years
- Eligible Genders
- All
- Accepts Healthy Volunteers
- No
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
- 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
- Phase
- Study Type
- Observational [Patient Registry]
- Observational Model
- Case-Only
- Time Perspective
- Cross-Sectional
Recruiting Locations
University of Alabama Birmingham
Birmingham, Alabama 35294
Birmingham, Alabama 35294
Barrow Neurological Institute
Phoenix, Arizona 85013
Phoenix, Arizona 85013
University of Arkansas
Fayetteville, Arkansas 72701
Fayetteville, Arkansas 72701
University of California San Diego (UCSD)
La Jolla, California 92093
La Jolla, California 92093
University of California Los Angeles
Los Angeles, California 90095
Los Angeles, California 90095
University of California San Francisco (UCSF)
San Francisco, California 94143
San Francisco, California 94143
University of Colorado Anschutz
Aurora, Colorado 80045
Aurora, Colorado 80045
Aventura Neurology - Visionary Investigators Network
Aventura, Florida 33180
Aventura, Florida 33180
Parkinson's Disease & Movement Disorder Center of Boca Raton
Boca Raton, Florida 33486
Boca Raton, Florida 33486
University of Florida
Gainesville, Florida 32611
Gainesville, Florida 32611
Northwestern University
Evanston, Illinois 60208
Evanston, Illinois 60208
Louisiana State University
Shreveport, Louisiana 71103
Shreveport, Louisiana 71103
University of Maryland
College Park, Maryland 20742
College Park, Maryland 20742
Massachusetts General Hospital (MGH)
Boston, Massachusetts 02114
Boston, Massachusetts 02114
Beth Israel Deaconess Medical Center (BIDMC)
Boston, Massachusetts 02215
Boston, Massachusetts 02215
Struthers Parkinson's Center - HealthPartners Park Nicollet
Golden Valley, Minnesota 55427
Golden Valley, Minnesota 55427
Rutgers University
New Brunswick, New Jersey 08854
New Brunswick, New Jersey 08854
New York University
New York, New York 10017
New York, New York 10017
University of North Carolina - Chapel Hill
Chapel Hill, North Carolina 27599
Chapel Hill, North Carolina 27599
Atrium Health
Charlotte, North Carolina 28207
Charlotte, North Carolina 28207
Case Western Reserve University
Cleveland, Ohio 44106
Cleveland, Ohio 44106
Oregon Health and Science University
Portland, Oregon 97239
Portland, Oregon 97239
University of Pennsylvania
Philadelphia, Pennsylvania 19104
Philadelphia, Pennsylvania 19104
Thomas Jefferson University
Philadelphia, Pennsylvania 19144
Philadelphia, Pennsylvania 19144
Medical University of South Carolina
Charleston, South Carolina 29425
Charleston, South Carolina 29425
Vanderbilt University
Nashville, Tennessee 37235
Nashville, Tennessee 37235
Virginia Commonwealth University
Richmond, Virginia 23284
Richmond, Virginia 23284
More Details
- NCT ID
- NCT04994015
- Status
- Recruiting
- Sponsor
- Parkinson's Foundation
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.