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 Sex
- 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 4049979, Alabama 4829764 35294
Birmingham 4049979, Alabama 4829764 35294
Barrow Neurological Institute
Phoenix 5308655, Arizona 5551752 85013
Phoenix 5308655, Arizona 5551752 85013
University of Arkansas
Fayetteville 4110486, Arkansas 4099753 72701
Fayetteville 4110486, Arkansas 4099753 72701
University of California San Diego (UCSD)
La Jolla 5363943, California 5332921 92093
La Jolla 5363943, California 5332921 92093
University of California Los Angeles
Los Angeles 5368361, California 5332921 90095
Los Angeles 5368361, California 5332921 90095
University of California San Francisco (UCSF)
San Francisco 5391959, California 5332921 94143
San Francisco 5391959, California 5332921 94143
University of Colorado Anschutz
Aurora 5412347, Colorado 5417618 80045
Aurora 5412347, Colorado 5417618 80045
Hartford Healthcare
Hartford 4835797, Connecticut 4831725 06066
Hartford 4835797, Connecticut 4831725 06066
Aventura Neurology - Visionary Investigators Network
Aventura 4146429, Florida 4155751 33180
Aventura 4146429, Florida 4155751 33180
Parkinson's Disease & Movement Disorder Center of Boca Raton
Boca Raton 4148411, Florida 4155751 33486
Boca Raton 4148411, Florida 4155751 33486
University of Florida
Gainesville 4156404, Florida 4155751 32611
Gainesville 4156404, Florida 4155751 32611
University of Miami
Miami 4164138, Florida 4155751 33131
Miami 4164138, Florida 4155751 33131
Cleveland Clinic Weston
Weston 4178003, Florida 4155751 33331
Weston 4178003, Florida 4155751 33331
The Queen's Health System
Honolulu 5856195, Hawaii 5855797 96813
Honolulu 5856195, Hawaii 5855797 96813
University of Illinois-Chicago
Chicago 4887398, Illinois 4896861 60607
Chicago 4887398, Illinois 4896861 60607
Rush University
Chicago 4887398, Illinois 4896861 60612
Chicago 4887398, Illinois 4896861 60612
University of Chicago
Chicago 4887398, Illinois 4896861 60637
Chicago 4887398, Illinois 4896861 60637
Northwestern University
Evanston 4891382, Illinois 4896861 60208
Evanston 4891382, Illinois 4896861 60208
Indiana University
Indianapolis 4259418, Indiana 4921868 46202
Indianapolis 4259418, Indiana 4921868 46202
University of Iowa
Iowa City 4862034, Iowa 4862182 52242
Iowa City 4862034, Iowa 4862182 52242
University of Kansas
Lawrence 4274277, Kansas 4273857 66045
Lawrence 4274277, Kansas 4273857 66045
University of Kentucky
Lexington 4297983, Kentucky 6254925 40506
Lexington 4297983, Kentucky 6254925 40506
Louisiana State University
Shreveport 4341513, Louisiana 4331987 71103
Shreveport 4341513, Louisiana 4331987 71103
Johns Hopkins
Baltimore 4347778, Maryland 4361885 21218
Baltimore 4347778, Maryland 4361885 21218
University of Maryland
College Park 4351977, Maryland 4361885 20742
College Park 4351977, Maryland 4361885 20742
Massachusetts General Hospital (MGH)
Boston 4930956, Massachusetts 6254926 02114
Boston 4930956, Massachusetts 6254926 02114
BMC Community Hospital
Boston 4930956, Massachusetts 6254926 02136
Boston 4930956, Massachusetts 6254926 02136
Beth Israel Deaconess Medical Center (BIDMC)
Boston 4930956, Massachusetts 6254926 02215
Boston 4930956, Massachusetts 6254926 02215
Struthers Parkinson's Center - HealthPartners Park Nicollet
Golden Valley 5028163, Minnesota 5037779 55427
Golden Valley 5028163, Minnesota 5037779 55427
Rutgers University
New Brunswick 5101717, New Jersey 5101760 08854
New Brunswick 5101717, New Jersey 5101760 08854
University of New Mexico
Albuquerque 5454711, New Mexico 5481136 87106
Albuquerque 5454711, New Mexico 5481136 87106
New York University
New York 5128581, New York 5128638 10017
New York 5128581, New York 5128638 10017
Columbia University
New York 5128581, New York 5128638 10033
New York 5128581, New York 5128638 10033
University of North Carolina - Chapel Hill
Chapel Hill 4460162, North Carolina 4482348 27599
Chapel Hill 4460162, North Carolina 4482348 27599
Atrium Health
Charlotte 4460243, North Carolina 4482348 28207
Charlotte 4460243, North Carolina 4482348 28207
University of Cincinnati
Cincinnati 4508722, Ohio 5165418 45221
Cincinnati 4508722, Ohio 5165418 45221
Case Western Reserve University
Cleveland 5150529, Ohio 5165418 44106
Cleveland 5150529, Ohio 5165418 44106
Ohio State University
Columbus 4509177, Ohio 5165418 43210
Columbus 4509177, Ohio 5165418 43210
Oregon Health and Science University
Portland 5746545, Oregon 5744337 97239
Portland 5746545, Oregon 5744337 97239
University of Pennsylvania
Philadelphia 4560349, Pennsylvania 6254927 19104
Philadelphia 4560349, Pennsylvania 6254927 19104
Thomas Jefferson University
Philadelphia 4560349, Pennsylvania 6254927 19144
Philadelphia 4560349, Pennsylvania 6254927 19144
Medical University of South Carolina
Charleston 4574324, South Carolina 4597040 29425
Charleston 4574324, South Carolina 4597040 29425
Vanderbilt University
Nashville 4644585, Tennessee 4662168 37235
Nashville 4644585, Tennessee 4662168 37235
Baylor College of Medicine
Houston 4699066, Texas 4736286 77030
Houston 4699066, Texas 4736286 77030
University of Texas at San Antonio
San Antonio 4726206, Texas 4736286 78249
San Antonio 4726206, Texas 4736286 78249
Intermountain Health
Murray 5778755, Utah 5549030 84107
Murray 5778755, Utah 5549030 84107
Virginia Commonwealth University
Richmond 4781708, Virginia 6254928 23284
Richmond 4781708, Virginia 6254928 23284
Evergreen Health
Kirkland 5799841, Washington 5815135 98034
Kirkland 5799841, Washington 5815135 98034
Inland Northwest Research
Spokane 5811696, Washington 5815135 99202
Spokane 5811696, Washington 5815135 99202
Medical College of Wisconsin
Milwaukee 5263045, Wisconsin 5279468 53226
Milwaukee 5263045, Wisconsin 5279468 53226
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.