Parkinson's Foundation PD GENEration Genetic Registry

NCT ID: NCT04994015

Last Updated: 2025-05-21

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

Get a concise snapshot of the trial, including recruitment status, study phase, enrollment targets, and key timeline milestones.

Recruitment Status

RECRUITING

Total Enrollment

25000 participants

Study Classification

OBSERVATIONAL

Study Start Date

2020-12-20

Study Completion Date

2026-07-01

Brief Summary

Review the sponsor-provided synopsis that highlights what the study is about and why it is being conducted.

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

Detailed Description

Dive into the extended narrative that explains the scientific background, objectives, and procedures in greater depth.

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.

Conditions

See the medical conditions and disease areas that this research is targeting or investigating.

Parkinson's Disease

Study Design

Understand how the trial is structured, including allocation methods, masking strategies, primary purpose, and other design elements.

Observational Model Type

CASE_ONLY

Study Time Perspective

CROSS_SECTIONAL

Interventions

Learn about the drugs, procedures, or behavioral strategies being tested and how they are applied within this trial.

Lab Assay for seven genetic variants for Parkinson's Disease

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

Intervention Type DEVICE

Eligibility Criteria

Check the participation requirements, including inclusion and exclusion rules, age limits, and whether healthy volunteers are accepted.

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
Minimum Eligible Age

18 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

Meet the organizations funding or collaborating on the study and learn about their roles.

Indiana University

OTHER

Sponsor Role collaborator

Fulgent Genetics

UNKNOWN

Sponsor Role collaborator

The Parkinson Study Group

NETWORK

Sponsor Role collaborator

Parkinson's Foundation

OTHER

Sponsor Role lead

Responsible Party

Identify the individual or organization who holds primary responsibility for the study information submitted to regulators.

Responsibility Role SPONSOR

Principal Investigators

Learn about the lead researchers overseeing the trial and their institutional affiliations.

James Beck, PhD

Role: PRINCIPAL_INVESTIGATOR

Parkinson's Foundation

Roy N Alcalay, MS, MD

Role: PRINCIPAL_INVESTIGATOR

Tel Aviv Sourasky Medical Center, Columbia University Irving Medical Center

Locations

Explore where the study is taking place and check the recruitment status at each participating site.

University of Alabama Birmingham

Birmingham, Alabama, United States

Site Status RECRUITING

MD First Research

Chandler, Arizona, United States

Site Status TERMINATED

Barrow Neurological Institute

Phoenix, Arizona, United States

Site Status RECRUITING

University of Arkansas

Fayetteville, Arkansas, United States

Site Status RECRUITING

University of California San Diego (UCSD)

La Jolla, California, United States

Site Status RECRUITING

University of California Los Angeles

Los Angeles, California, United States

Site Status RECRUITING

University of California San Francisco (UCSF)

San Francisco, California, United States

Site Status RECRUITING

University of Colorado Anschutz

Aurora, Colorado, United States

Site Status RECRUITING

Hartford Healthcare

Hartford, Connecticut, United States

Site Status RECRUITING

Aventura Neurology - Visionary Investigators Network

Aventura, Florida, United States

Site Status RECRUITING

Parkinson's Disease & Movement Disorder Center of Boca Raton

Boca Raton, Florida, United States

Site Status RECRUITING

University of Florida

Gainesville, Florida, United States

Site Status RECRUITING

University of Miami

Miami, Florida, United States

Site Status RECRUITING

Cleveland Clinic Weston

Weston, Florida, United States

Site Status RECRUITING

Morehouse College

Atlanta, Georgia, United States

Site Status RECRUITING

The Queen's Health System

Honolulu, Hawaii, United States

Site Status RECRUITING

University of Illinois-Chicago

Chicago, Illinois, United States

Site Status RECRUITING

Rush University

Chicago, Illinois, United States

Site Status RECRUITING

University of Chicago

Chicago, Illinois, United States

Site Status RECRUITING

Northwestern University

Evanston, Illinois, United States

Site Status RECRUITING

Indiana University

Indianapolis, Indiana, United States

Site Status RECRUITING

University of Iowa

Iowa City, Iowa, United States

Site Status RECRUITING

University of Kansas

Lawrence, Kansas, United States

Site Status RECRUITING

University of Kentucky

Lexington, Kentucky, United States

Site Status RECRUITING

Louisiana State University

Shreveport, Louisiana, United States

Site Status RECRUITING

Johns Hopkins

Baltimore, Maryland, United States

Site Status RECRUITING

University of Maryland

College Park, Maryland, United States

Site Status RECRUITING

Massachusetts General Hospital (MGH)

Boston, Massachusetts, United States

Site Status RECRUITING

BMC Community Hospital

Boston, Massachusetts, United States

Site Status RECRUITING

Beth Israel Deaconess Medical Center (BIDMC)

Boston, Massachusetts, United States

Site Status RECRUITING

Struthers Parkinson's Center - HealthPartners Park Nicollet

Golden Valley, Minnesota, United States

Site Status RECRUITING

Rutgers University

New Brunswick, New Jersey, United States

Site Status RECRUITING

University of New Mexico

Albuquerque, New Mexico, United States

Site Status RECRUITING

New York University

New York, New York, United States

Site Status RECRUITING

Mount Sinai

New York, New York, United States

Site Status RECRUITING

Columbia University

New York, New York, United States

Site Status RECRUITING

University of North Carolina - Chapel Hill

Chapel Hill, North Carolina, United States

Site Status RECRUITING

Atrium Health

Charlotte, North Carolina, United States

Site Status RECRUITING

University of Cincinnati

Cincinnati, Ohio, United States

Site Status RECRUITING

Case Western Reserve University

Cleveland, Ohio, United States

Site Status RECRUITING

Cleveland Clinic

Cleveland, Ohio, United States

Site Status RECRUITING

Ohio State University

Columbus, Ohio, United States

Site Status RECRUITING

Oregon Health and Science University

Portland, Oregon, United States

Site Status RECRUITING

University of Pennsylvania

Philadelphia, Pennsylvania, United States

Site Status RECRUITING

Thomas Jefferson University

Philadelphia, Pennsylvania, United States

Site Status RECRUITING

Medical University of South Carolina

Charleston, South Carolina, United States

Site Status RECRUITING

Vanderbilt University

Nashville, Tennessee, United States

Site Status RECRUITING

Baylor College of Medicine

Houston, Texas, United States

Site Status RECRUITING

University of Texas at San Antonio

San Antonio, Texas, United States

Site Status RECRUITING

Intermountain Health

Murray, Utah, United States

Site Status RECRUITING

Virginia Commonwealth University

Richmond, Virginia, United States

Site Status RECRUITING

Evergreen Health

Kirkland, Washington, United States

Site Status RECRUITING

Inland Northwest Research

Spokane, Washington, United States

Site Status RECRUITING

Medical College of Wisconsin

Milwaukee, Wisconsin, United States

Site Status RECRUITING

Toronto Western Hospital

Toronto, Ontario, Canada

Site Status RECRUITING

Tel Aviv Sourasky Medical Center

Tel Aviv, , Israel

Site Status RECRUITING

Countries

Review the countries where the study has at least one active or historical site.

United States Canada Israel

Central Contacts

Reach out to these primary contacts for questions about participation or study logistics.

Kamalini Ghosh, MS

Role: CONTACT

1-800-473-4636

Facility Contacts

Find local site contact details for specific facilities participating in the trial.

Fariba Rahimi

Role: primary

Caitlin Goodman

Role: primary

Kennetha Newman

Role: primary

Lisa Solomon

Role: primary

858-822-5873

Alexandra Shurlock

Role: primary

Aaron Daley

Role: primary

Janet Clarke

Role: primary

Brandon Canty

Role: primary

Nicole Rios

Role: primary

Karla Arias

Role: primary

Karina Weldon

Role: backup

Amanda Fessenden

Role: primary

Oriana Tarabay

Role: primary

Laura Duarte

Role: primary

Tamiko Durham

Role: primary

Malika Faouzi

Role: primary

Vijay Palakuzhy

Role: primary

Nathan Krinickas

Role: primary

Jacqueline Vanegas

Role: backup

Tomas Mercado

Role: primary

Rachel Leewandowski

Role: primary

Lauren Perrey-Moore

Role: primary

Heena Olalde

Role: primary

April Langhammerr

Role: primary

Renee Wagner

Role: primary

Mackenzie Williams

Role: primary

Ebubechukwu Onyinanya

Role: primary

Rebecca Weimer

Role: primary

Vanessa Ibrahim

Role: primary

Madhuri Sangam

Role: primary

Jacqueline Forbes

Role: primary

Taylor Billeadeau

Role: primary

Edward Scot Stenroos, MD

Role: primary

Anna Tingin

Role: primary

Kelly Astudillo

Role: primary

Maya Rawal

Role: primary

Alexander Haimovich

Role: primary

Hans Nettescheim

Role: primary

Gina M'Buyamba

Role: primary

Kelly DeLano

Role: primary

Eileen Terrell

Role: primary

Jerrod Cook

Role: primary

Kate Ambrogi

Role: primary

Emily Leonard

Role: primary

Neda Almassi

Role: primary

Michelle Roachman

Role: primary

Sandra Wilson

Role: primary

Jacqueline Harris

Role: primary

Silvia Onofre

Role: primary

Carolyn Paiz

Role: primary

Omalys Biggs Rodriguez

Role: backup

Nic Unsworth

Role: primary

Virginia Norris

Role: primary

Nasir Hemat

Role: primary

Amanda Kiefer

Role: primary

Jordan Bayola

Role: primary

Nazish Ahmed

Role: primary

Roni Cohen

Role: primary

Provided Documents

Download supplemental materials such as informed consent forms, study protocols, or participant manuals.

Document Type: Informed Consent Form

View Document

Other Identifiers

Review additional registry numbers or institutional identifiers associated with this trial.

PDGENE-PF

Identifier Type: -

Identifier Source: org_study_id

More Related Trials

Additional clinical trials that may be relevant based on similarity analysis.

Epilepsy Phenome/Genome Project
NCT00552045 COMPLETED
Genetics of Motor Learning
NCT01105845 TERMINATED
The CurePSP Genetics Program
NCT06647641 RECRUITING
Initiative for Clinical Long-read Sequencing
NCT06060184 NOT_YET_RECRUITING NA