Parkinson's Foundation PD GENEration Genetic Registry

Last updated: May 28, 2024
Sponsor: Parkinson's Foundation
Overall Status: Active - Recruiting

Phase

N/A

Condition

Dyskinesias

Parkinson's Disease

Treatment

Lab Assay for seven genetic variants for Parkinson's Disease

Clinical Study ID

NCT04994015
PDGENE-PF
  • Ages > 18
  • All Genders

Study Summary

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

Eligibility Criteria

Inclusion

Inclusion Criteria:

  • Study Population 1: PWP (open for recruitment)
  1. Meet Movement Disorder Society (MDS) Clinical Diagnostic Criteria forParkinson's Disease: probable diagnosis.

  2. Willingness to undergo genetic testing, and choose to be informed of genetictesting 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 haveread and signed the informed consent forms (ICFs) based on site clinician'sdetermination.

  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 ifconfirmatory genetic testing is deemed necessary by the genetic testing laboratory.

Exclusion

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

Total Participants: 25000
Treatment Group(s): 1
Primary Treatment: Lab Assay for seven genetic variants for Parkinson's Disease
Phase:
Study Start date:
December 20, 2020
Estimated Completion Date:
June 01, 2025

Study 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.

Connect with a study center

  • Toronto Western Hospital

    Toronto, Ontario
    Canada

    Active - Recruiting

  • Tel Aviv Sourasky Medical Center

    Tel Aviv, 64239
    Israel

    Active - Recruiting

  • MD First Research

    Chandler, Arizona 85286
    United States

    Terminated

  • Barrow Neurological Institute

    Phoenix, Arizona 85013
    United States

    Active - Recruiting

  • University of Arkansas

    Fayetteville, Arkansas 72701
    United States

    Active - Recruiting

  • University of California San Diego (UCSD)

    La Jolla, California 92093
    United States

    Active - Recruiting

  • University of California San Francisco (UCSF)

    San Francisco, California 94143
    United States

    Active - Recruiting

  • University of Colorado

    Denver, Colorado 80045
    United States

    Site Not Available

  • Aventura Neurology - Visionary Investigators Network

    Aventura, Florida 33180
    United States

    Active - Recruiting

  • Parkinson's Disease & Movement Disorder Center of Boca Raton

    Boca Raton, Florida 33486
    United States

    Active - Recruiting

  • University of Florida

    Gainesville, Florida 32611
    United States

    Active - Recruiting

  • University of Miami

    Miami, Florida 33131
    United States

    Active - Recruiting

  • Cleveland Clinic Weston

    Weston, Florida 33331
    United States

    Active - Recruiting

  • Morehouse College

    Atlanta, Georgia 30314
    United States

    Active - Recruiting

  • The Queen's Health System

    Honolulu, Hawaii 96813
    United States

    Active - Recruiting

  • Rush University

    Chicago, Illinois 60612
    United States

    Active - Recruiting

  • University of Chicago

    Chicago, Illinois 60637
    United States

    Active - Recruiting

  • University of Illinois-Chicago

    Chicago, Illinois 60607
    United States

    Active - Recruiting

  • Northwestern University

    Evanston, Illinois 60208
    United States

    Active - Recruiting

  • Indiana University

    Indianapolis, Indiana 46202
    United States

    Active - Recruiting

  • University of Iowa

    Iowa City, Iowa 52242
    United States

    Active - Recruiting

  • University of Kansas

    Lawrence, Kansas 66045
    United States

    Active - Recruiting

  • University of Kentucky

    Lexington, Kentucky 40506
    United States

    Active - Recruiting

  • Johns Hopkins

    Baltimore, Maryland 21218
    United States

    Active - Recruiting

  • University of Maryland

    College Park, Maryland 20742
    United States

    Active - Recruiting

  • Beth Israel Deaconess Medical Center (BIDMC)

    Boston, Massachusetts 02215
    United States

    Active - Recruiting

  • Massachusetts General Hospital (MGH)

    Boston, Massachusetts 02114
    United States

    Active - Recruiting

  • St. Elizabeth's Medical Center

    Boston, Massachusetts 02136
    United States

    Active - Recruiting

  • Struthers Parkinson's Center - HealthPartners Park Nicollet

    Golden Valley, Minnesota 55427
    United States

    Active - Recruiting

  • Rutgers University

    New Brunswick, New Jersey 08854
    United States

    Active - Recruiting

  • Columbia University

    New York, New York 10033
    United States

    Active - Recruiting

  • Mount Sinai

    New York, New York 10029
    United States

    Active - Recruiting

  • New York University

    New York, New York 10017
    United States

    Active - Recruiting

  • University of North Carolina - Chapel Hill

    Chapel Hill, North Carolina 27599
    United States

    Active - Recruiting

  • Atrium Health

    Charlotte, North Carolina 28207
    United States

    Active - Recruiting

  • University of Cincinnati

    Cincinnati, Ohio 45221
    United States

    Active - Recruiting

  • Case Western Reserve University

    Cleveland, Ohio 44106
    United States

    Active - Recruiting

  • Cleveland Clinic

    Cleveland, Ohio 44195
    United States

    Active - Recruiting

  • Ohio State University

    Columbus, Ohio 43210
    United States

    Active - Recruiting

  • Oregon Health and Science University

    Portland, Oregon 97239
    United States

    Active - Recruiting

  • Thomas Jefferson University

    Philadelphia, Pennsylvania 19144
    United States

    Active - Recruiting

  • University of Pennsylvania

    Philadelphia, Pennsylvania 19104
    United States

    Active - Recruiting

  • Medical University of South Carolina

    Charleston, South Carolina 29425
    United States

    Active - Recruiting

  • Vanderbilt University

    Nashville, Tennessee 37235
    United States

    Active - Recruiting

  • Baylor College of Medicine

    Houston, Texas 77030
    United States

    Active - Recruiting

  • University of Texas at San Antonio

    San Antonio, Texas 78249
    United States

    Active - Recruiting

  • Virginia Commonwealth University

    Richmond, Virginia 23284
    United States

    Active - Recruiting

  • Inland Northwest Research

    Spokane, Washington 99202
    United States

    Active - Recruiting

  • Medical College of Wisconsin

    Milwaukee, Wisconsin 53226
    United States

    Active - Recruiting

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