Parkinson's Foundation PD GENEration Genetic Registry

September 3, 2026 updated by: Parkinson's Foundation
Development of a central repository for PD-related genomic data for future research.

Study Overview

Status

Recruiting

Conditions

Intervention / Treatment

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.

Study Type

Observational

Enrollment (Estimated)

35382

Phase

  • Not Applicable

Contacts and Locations

This section provides the contact details for those conducting the study, and information on where this study is being conducted.

Study Contact

Study Locations

  • Canada
    • Alberta
      • Edmonton, Alberta, Canada, T5J 4P6
        • Recruiting
        • University of Alberta
        • Principal Investigator:
          • Janis Miyasaki, MD
        • Contact:
    • British Columbia
      • Vancouver, British Columbia, Canada, V6T 1Z3
        • Recruiting
        • University of British Columbia
        • Principal Investigator:
          • Silke Appel-Cresswell
        • Contact:
    • Ontario
      • Toronto, Ontario, Canada
        • Recruiting
        • Toronto Western Hospital
        • Contact:
        • Principal Investigator:
          • Connie Marras, MD, PhD
    • Quebec
      • Montreal, Quebec, Canada, H3A 0G4
        • Active, not recruiting
        • McGill University
  • Israel
      • Jerusalem, Israel
        • Recruiting
        • Shaare Zedek Medical Center
        • Principal Investigator:
          • Gilad Yahalom, MD
        • Contact:
      • Ramat Gan, Israel
      • Tel Aviv, Israel, 64239
        • Recruiting
        • Tel Aviv Sourasky Medical Center
        • Principal Investigator:
          • Penina Ponger, MD
        • Principal Investigator:
          • Roy N Alcalay, MD
        • Contact:
        • Contact:
  • United States
    • Alabama
      • Birmingham, Alabama, United States, 35294
        • Active, not recruiting
        • University of Alabama Birmingham
    • Arizona
      • Chandler, Arizona, United States, 85286
        • Terminated
        • MD First Research
      • Phoenix, Arizona, United States, 85013
        • Recruiting
        • Barrow Neurological Institute
        • Principal Investigator:
          • Holly Shill, MD
        • Contact:
    • Arkansas
      • Fayetteville, Arkansas, United States, 72701
        • Recruiting
        • University of Arkansas
        • Principal Investigator:
          • Rohit Dhall, MD
        • Contact:
    • California
      • La Jolla, California, United States, 92093
        • Recruiting
        • University of California San Diego (UCSD)
        • Principal Investigator:
          • Irene Litvan, MD
        • Contact:
      • Los Angeles, California, United States, 90095
        • Recruiting
        • University of California Los Angeles
        • Contact:
        • Principal Investigator:
          • Jeff Bronstein, MD, PhD
      • Los Angeles, California, United States, 90033
        • Recruiting
        • University of Southern California
        • Contact:
        • Principal Investigator:
          • Katherine Wong, MD
      • Redwood City, California, United States, 94063
        • Recruiting
        • Stanford University
        • Contact:
        • Principal Investigator:
          • Hengameh Zahed
      • San Francisco, California, United States, 94143
        • Recruiting
        • University of California San Francisco (UCSF)
        • Contact:
        • Principal Investigator:
          • Jill Ostrem, MD
    • Colorado
      • Aurora, Colorado, United States, 80045
        • Recruiting
        • University of Colorado Anschutz
        • Principal Investigator:
          • Jeanne Feuerstein, MD
        • Contact:
    • Connecticut
      • Farmington, Connecticut, United States, 06030
        • Recruiting
        • University of Connecticut
        • Contact:
        • Principal Investigator:
          • Rodrigues Bernardo, MD, PhD
      • Hartford, Connecticut, United States, 06066
        • Active, not recruiting
        • Hartford Healthcare
    • Florida
      • Aventura, Florida, United States, 33180
        • Active, not recruiting
        • Aventura Neurology - Visionary Investigators Network
      • Boca Raton, Florida, United States, 33486
      • Gainesville, Florida, United States, 32611
      • Miami, Florida, United States, 33131
        • Recruiting
        • University of Miami
        • Principal Investigator:
          • Carlos Singer, MD
        • Principal Investigator:
          • Ihtsham Haq, MD
        • Sub-Investigator:
          • Henry Moore, MD
        • Contact:
      • Weston, Florida, United States, 33331
        • Active, not recruiting
        • Cleveland Clinic Weston
    • Georgia
      • Atlanta, Georgia, United States, 30314
        • Recruiting
        • Morehouse College
        • Principal Investigator:
          • Chantale Branson, MD
        • Contact:
    • Hawaii
      • Honolulu, Hawaii, United States, 96813
        • Recruiting
        • The Queen's Health System
        • Principal Investigator:
          • Michiko Bruno, MD
        • Sub-Investigator:
          • Fay Gao, MD
        • Contact:
    • Illinois
      • Chicago, Illinois, United States, 60637
        • Recruiting
        • University of Chicago
        • Principal Investigator:
          • Tao Xie, MD, PhD
        • Contact:
      • Chicago, Illinois, United States, 60612
      • Chicago, Illinois, United States, 60607
        • Recruiting
        • University of Illinois-Chicago
        • Principal Investigator:
          • Yasaman Kianirad, MD
        • Contact:
      • Evanston, Illinois, United States, 60208
    • Indiana
      • Indianapolis, Indiana, United States, 46202
        • Active, not recruiting
        • Indiana University
    • Iowa
      • Iowa City, Iowa, United States, 52242
        • Recruiting
        • University of Iowa
        • Contact:
        • Principal Investigator:
          • Annie Killoran, MD, MS
    • Kansas
      • Lawrence, Kansas, United States, 66045
        • Recruiting
        • University of Kansas
        • Principal Investigator:
          • Rajesh Pahwa, MD
        • Contact:
    • Kentucky
      • Lexington, Kentucky, United States, 40506
        • Recruiting
        • University of Kentucky
        • Contact:
        • Principal Investigator:
          • Tritia Yamasaki, MD, PhD
    • Louisiana
      • Shreveport, Louisiana, United States, 71103
        • Recruiting
        • Louisiana State University
        • Principal Investigator:
          • Elizabeth Disbrow, PhD
        • Contact:
    • Maine
      • Portland, Maine, United States, 04102
        • Not yet recruiting
        • Maine Medical Center
        • Principal Investigator:
          • Michael Kleinmann
    • Maryland
      • Baltimore, Maryland, United States, 21218
        • Recruiting
        • Johns Hopkins
        • Principal Investigator:
          • Kelly Mills, MD
        • Contact:
      • College Park, Maryland, United States, 20742
        • Recruiting
        • University of Maryland
        • Contact:
        • Principal Investigator:
          • Lisa Shulman
    • Massachusetts
      • Boston, Massachusetts, United States, 02215
        • Recruiting
        • Beth Israel Deaconess Medical Center (Bidmc)
        • Principal Investigator:
          • David Simon, MD
        • Contact:
      • Boston, Massachusetts, United States, 02114
        • Recruiting
        • Massachusetts General Hospital (MGH)
        • Principal Investigator:
          • Anne-Marie Wills, MD
        • Contact:
      • Boston, Massachusetts, United States, 02136
        • Active, not recruiting
        • BMC Community Hospital
    • Michigan
      • Ann Arbor, Michigan, United States, 48109
        • Active, not recruiting
        • University of Michigan
    • Minnesota
      • Golden Valley, Minnesota, United States, 55427
        • Recruiting
        • Struthers Parkinson's Center - HealthPartners Park Nicollet
        • Principal Investigator:
          • Martha Nance, MD
        • Contact:
    • Nevada
      • Las Vegas, Nevada, United States, 89106
        • Recruiting
        • Cleveland Clinic Lou Ruvo Center for Brain Health
        • Principal Investigator:
          • Zoltan Mari
        • Contact:
    • New Jersey
      • New Brunswick, New Jersey, United States, 08854
        • Active, not recruiting
        • Rutgers University
    • New Mexico
      • Albuquerque, New Mexico, United States, 87106
        • Recruiting
        • University of New Mexico
        • Contact:
        • Principal Investigator:
          • Amanda Deligtisch, MD
    • New York
      • New York, New York, United States, 10029
      • New York, New York, United States, 10033
        • Recruiting
        • Columbia University
        • Contact:
        • Principal Investigator:
          • Julian Agin-Liebes, MD
      • New York, New York, United States, 10017
        • Active, not recruiting
        • New York University
      • Rochester, New York, United States, 14618
    • North Carolina
      • Chapel Hill, North Carolina, United States, 27599
        • Recruiting
        • University of North Carolina - Chapel Hill
        • Principal Investigator:
          • Claudia Testa, MD, PhD
        • Contact:
      • Charlotte, North Carolina, United States, 28207
        • Active, not recruiting
        • Atrium Health
    • Ohio
      • Cincinnati, Ohio, United States, 45221
        • Active, not recruiting
        • University of Cincinnati
      • Cleveland, Ohio, United States, 44106
      • Cleveland, Ohio, United States, 44195
        • Recruiting
        • Cleveland Clinic
        • Principal Investigator:
          • Hubert Fernandez, MD
        • Contact:
      • Colombus, Ohio, United States, 43210
    • Oregon
      • Portland, Oregon, United States, 97239
        • Recruiting
        • Oregon Health and Science University
        • Principal Investigator:
          • Joseph Quinn, MD
        • Contact:
    • Pennsylvania
      • Philadelphia, Pennsylvania, United States, 19104
      • Philadelphia, Pennsylvania, United States, 19144
      • Pittsburgh, Pennsylvania, United States, 15212
        • Recruiting
        • Allegheny Health Network
        • Contact:
        • Principal Investigator:
          • Sushma Kola
    • South Carolina
      • Charleston, South Carolina, United States, 29425
        • Recruiting
        • Medical University of South Carolina
        • Contact:
        • Principal Investigator:
          • Gonzalo Revuelta, DO
    • Tennessee
      • Nashville, Tennessee, United States, 37235
    • Texas
      • Houston, Texas, United States, 77030
      • Houston, Texas, United States, 77030
        • Recruiting
        • The University of Texas Health Science Center at Houston
        • Contact:
        • Principal Investigator:
          • Shivika Chandra
      • San Antonio, Texas, United States, 78249
        • Recruiting
        • University of Texas at San Antonio
        • Contact:
        • Principal Investigator:
          • Oleni Okeanis Vaou, MD
        • Contact:
    • Utah
      • Murray, Utah, United States, 84107
        • Recruiting
        • Intermountain Health
        • Principal Investigator:
          • Kathleen McKee, MD
        • Contact:
    • Virginia
      • Richmond, Virginia, United States, 23284
        • Recruiting
        • Virginia Commonwealth University
        • Principal Investigator:
          • Matthew Barrett, MD
        • Contact:
    • Washington
      • Kirkland, Washington, United States, 98034
      • Spokane, Washington, United States, 99202
        • Recruiting
        • Inland Northwest Research
        • Principal Investigator:
          • Jason Aldred, MD
        • Contact:
    • Wisconsin
      • Milwaukee, Wisconsin, United States, 53226
        • Recruiting
        • Medical College of Wisconsin
        • Principal Investigator:
          • Karen Blindauer, MD
        • Contact:
        • Contact:

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Eligibility Criteria

Ages Eligible for Study

18 years and older (Adult, Older Adult)

Accepts Healthy Volunteers

No

Sampling Method

Non-Probability Sample

Study Population

Any person with probable diagnosis of Parkinson's disease according to the Movement Disorders Society criteria.

Description

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:

  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 Plan

This section provides details of the study plan, including how the study is designed and what the study is measuring.

How is the study designed?

Design Details

What is the study measuring?

Primary Outcome Measures

Outcome Measure
Measure Description
Time Frame
Prevalence of Parkinson's related genetic mutations in an convenience cohort
Time Frame: 6 months
Identify people with Parkinson's who have genetic mutations to advance basic science and clinical research.
6 months
Educating people with Parkinson's of their genetic mutation status through genetic testing and counseling
Time Frame: 6 months
People who are informed of their genetic status may be empowered to learn more about their disease and participant in clinical research.
6 months

Collaborators and Investigators

This is where you will find people and organizations involved with this study.

Sponsor

Parkinson's Foundation

Collaborators

Indiana University
The Parkinson Study Group
Fulgent Genetics

Investigators

  • Principal Investigator: James Beck, PhD, Parkinson's Foundation
  • Principal Investigator: Roy N Alcalay, MS, MD, Tel Aviv Sourasky Medical Center, Columbia University Irving Medical Center

Study record dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Major Dates

Study Start (Actual)

December 20, 2020

Primary Completion (Estimated)

July 1, 2027

Study Completion (Estimated)

July 1, 2027

Study Registration Dates

First Submitted

July 29, 2021

First Submitted That Met QC Criteria

July 29, 2021

First Posted (Actual)

August 6, 2021

Study Record Updates

Last Update Posted (Actual)

September 8, 2026

Last Update Submitted That Met QC Criteria

September 3, 2026

Last Verified

September 1, 2026

More Information

Terms related to this study

Keywords

Additional Relevant MeSH Terms

Other Study ID Numbers

  • PDGENE-PF

Drug and device information, study documents

Studies a U.S. FDA-regulated drug product

No

Studies a U.S. FDA-regulated device product

No

This information was retrieved directly from the website clinicaltrials.gov without any changes. If you have any requests to change, remove or update your study details, please contact register@clinicaltrials.gov. As soon as a change is implemented on clinicaltrials.gov, this will be updated automatically on our website as well.

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