RecruitingNCT04994015

Parkinson's Foundation PD GENEration Genetic Registry


Sponsor

Parkinson's Foundation

Enrollment

25,000 participants

Start Date

Dec 20, 2020

Study Type

OBSERVATIONAL

Conditions

Summary

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


Eligibility

Min Age: 18 Years

Inclusion Criteria7

  • 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.

Exclusion Criteria5

  • 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

Interventions

DEVICELab Assay for seven genetic variants for Parkinson's Disease

Counseling provided to participant by site clinician/physician/genetic counselor.


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

Ohio State University

Columbus, Ohio, United States

Oregon Health and Science University

Portland, Oregon, United States

University of Pennsylvania

Philadelphia, Pennsylvania, United States

Thomas Jefferson University

Philadelphia, Pennsylvania, United States

Medical University of South Carolina

Charleston, South Carolina, United States

Vanderbilt University

Nashville, Tennessee, United States

Baylor College of Medicine

Houston, Texas, United States

University of Texas at San Antonio

San Antonio, Texas, United States

Intermountain Health

Murray, Utah, United States

Virginia Commonwealth University

Richmond, Virginia, United States

Evergreen Health

Kirkland, Washington, United States

Inland Northwest Research

Spokane, Washington, United States

Medical College of Wisconsin

Milwaukee, Wisconsin, United States

Toronto Western Hospital

Toronto, Ontario, Canada

Tel Aviv Sourasky Medical Center

Tel Aviv, Israel

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