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A genetic roadmap for Parkinson's: testing thousands to unlock clues

NCT ID NCT04994015

Knowledge-focused Sponsor: Parkinson's Foundation Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now This study
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing
Running, but no longer taking on new participants.
Completed
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

First seen Sep 08, 2026 · Last updated Sep 09, 2026 · Updated 1 time

Summary

This study offers genetic testing and counseling to people with Parkinson's disease. Researchers aim to identify genetic mutations linked to the condition and build a large database for future research. Participants learn their genetic status, which may empower them to join clinical studies and deepen their understanding of the disease.

What this could mean

Our plain-language read of the trial. This is informational only, not medical advice or a prediction.

Active substance
Genetic testing and counseling for Parkinson's-related genes
What this could lead to
If successful, this could create a large genetic database to help researchers understand Parkinson's better and develop targeted treatments.
What could go wrong
The study is observational and does not test a treatment. Results depend on many participants joining and sharing data, and genetic findings may not directly lead to new therapies.

This is an AI summary of the original study and may miss details. Read our disclaimer.

Study facts

What this study's own registry entry says, in plain language.

Participants

About 35,382 people

The number the study aims to enrol. It can still change while the study runs.

Started

Dec 2020

Expected to finish

Jul 2027

An estimate. End dates often move.

Lead sponsor

Other sponsor

The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Who is studied

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

Ages

18 years and older

Sex

Anyone

Healthy volunteers

Not accepted

This study is not open to healthy volunteers. The entry requirements below say who it is open to.

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

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

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Conditions

The condition(s) this trial relates to.

Parkinson disease

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

Parkinson's disease

How to take part

Only the study team decides who joins. These are the ways to reach them.

  1. The study's own enquiry address

    This study publishes an address for enquiries. See it below .

  2. The places running it

    57 sites in 3 countries. The list below names each one and where it is.

  3. The official record

    ClinicalTrials.gov lists the study team's own contact details, including names and phone numbers. We don't republish those.

    Open the record ↗

  4. A doctor treating you

    A doctor who knows your case can contact a study site on your behalf, and can tell you whether this study is worth pursuing at all.

Contacts and locations

Locations

  • Allegheny Health Network

    RECRUITING

    Pittsburgh, Pennsylvania, 15212, United States

  • Atrium Health

    ACTIVE_NOT_RECRUITING

    Charlotte, North Carolina, 28207, United States

  • Aventura Neurology - Visionary Investigators Network

    ACTIVE_NOT_RECRUITING

    Aventura, Florida, 33180, United States

  • BMC Community Hospital

    ACTIVE_NOT_RECRUITING

    Boston, Massachusetts, 02136, United States

  • Barrow Neurological Institute

    RECRUITING

    Phoenix, Arizona, 85013, United States

  • Baylor College of Medicine

    RECRUITING

    Houston, Texas, 77030, United States

  • Beth Israel Deaconess Medical Center (BIDMC)

    RECRUITING

    Boston, Massachusetts, 02215, United States

  • Case Western Reserve University

    RECRUITING

    Cleveland, Ohio, 44106, United States

  • Chaim Sheba Medical Center

    RECRUITING

    Ramat Gan, Israel

  • Cleveland Clinic

    RECRUITING

    Cleveland, Ohio, 44195, United States

  • Cleveland Clinic Lou Ruvo Center for Brain Health

    RECRUITING

    Las Vegas, Nevada, 89106, United States

  • Cleveland Clinic Weston

    ACTIVE_NOT_RECRUITING

    Weston, Florida, 33331, United States

  • Columbia University

    RECRUITING

    New York, New York, 10033, United States

  • Evergreen Health

    RECRUITING

    Kirkland, Washington, 98034, United States

  • Hartford Healthcare

    ACTIVE_NOT_RECRUITING

    Hartford, Connecticut, 06066, United States

  • Indiana University

    ACTIVE_NOT_RECRUITING

    Indianapolis, Indiana, 46202, United States

  • Inland Northwest Research

    RECRUITING

    Spokane, Washington, 99202, United States

  • Intermountain Health

    RECRUITING

    Murray, Utah, 84107, United States

  • Johns Hopkins

    RECRUITING

    Baltimore, Maryland, 21218, United States

  • Louisiana State University

    RECRUITING

    Shreveport, Louisiana, 71103, United States

  • MD First Research

    TERMINATED

    Chandler, Arizona, 85286, United States

  • Maine Medical Center

    NOT_YET_RECRUITING

    Portland, Maine, 04102, United States

  • Massachusetts General Hospital (MGH)

    RECRUITING

    Boston, Massachusetts, 02114, United States

  • McGill University

    ACTIVE_NOT_RECRUITING

    Montreal, Quebec, H3A 0G4, Canada

  • Medical College of Wisconsin

    RECRUITING

    Milwaukee, Wisconsin, 53226, United States

  • Medical University of South Carolina

    RECRUITING

    Charleston, South Carolina, 29425, United States

  • Morehouse College

    RECRUITING

    Atlanta, Georgia, 30314, United States

  • Mount Sinai

    RECRUITING

    New York, New York, 10029, United States

  • New York University

    ACTIVE_NOT_RECRUITING

    New York, New York, 10017, United States

  • Northwestern University

    RECRUITING

    Evanston, Illinois, 60208, United States

  • Ohio State University

    RECRUITING

    Colombus, Ohio, 43210, United States

  • Oregon Health and Science University

    RECRUITING

    Portland, Oregon, 97239, United States

    Contact Email: •••••@•••••

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

    RECRUITING

    Boca Raton, Florida, 33486, United States

  • Rush University

    RECRUITING

    Chicago, Illinois, 60612, United States

  • Rutgers University

    ACTIVE_NOT_RECRUITING

    New Brunswick, New Jersey, 08854, United States

  • Shaare Zedek Medical Center

    RECRUITING

    Jerusalem, Israel

  • Stanford University

    RECRUITING

    Redwood City, California, 94063, United States

  • Struthers Parkinson's Center - HealthPartners Park Nicollet

    RECRUITING

    Golden Valley, Minnesota, 55427, United States

  • Tel Aviv Sourasky Medical Center

    RECRUITING

    Tel Aviv, 64239, Israel

  • The Queen's Health System

    RECRUITING

    Honolulu, Hawaii, 96813, United States

  • The University of Texas Health Science Center at Houston

    RECRUITING

    Houston, Texas, 77030, United States

  • Thomas Jefferson University

    RECRUITING

    Philadelphia, Pennsylvania, 19144, United States

  • Toronto Western Hospital

    RECRUITING

    Toronto, Ontario, Canada

  • University of Alabama Birmingham

    ACTIVE_NOT_RECRUITING

    Birmingham, Alabama, 35294, United States

  • University of Alberta

    RECRUITING

    Edmonton, Alberta, T5J 4P6, Canada

  • University of Arkansas

    RECRUITING

    Fayetteville, Arkansas, 72701, United States

  • University of British Columbia

    RECRUITING

    Vancouver, British Columbia, V6T 1Z3, Canada

  • University of California Los Angeles

    RECRUITING

    Los Angeles, California, 90095, United States

  • University of California San Diego (UCSD)

    RECRUITING

    La Jolla, California, 92093, United States

  • University of California San Francisco (UCSF)

    RECRUITING

    San Francisco, California, 94143, United States

  • University of Chicago

    RECRUITING

    Chicago, Illinois, 60637, United States

  • University of Cincinnati

    ACTIVE_NOT_RECRUITING

    Cincinnati, Ohio, 45221, United States

  • University of Colorado Anschutz

    RECRUITING

    Aurora, Colorado, 80045, United States

  • University of Connecticut

    RECRUITING

    Farmington, Connecticut, 06030, United States

  • University of Florida

    RECRUITING

    Gainesville, Florida, 32611, United States

  • University of Illinois-Chicago

    RECRUITING

    Chicago, Illinois, 60607, United States

  • University of Iowa

    RECRUITING

    Iowa City, Iowa, 52242, United States

  • University of Kansas

    RECRUITING

    Lawrence, Kansas, 66045, United States

  • University of Kentucky

    RECRUITING

    Lexington, Kentucky, 40506, United States

  • University of Maryland

    RECRUITING

    College Park, Maryland, 20742, United States

  • University of Miami

    RECRUITING

    Miami, Florida, 33131, United States

  • University of Michigan

    ACTIVE_NOT_RECRUITING

    Ann Arbor, Michigan, 48109, United States

  • University of New Mexico

    RECRUITING

    Albuquerque, New Mexico, 87106, United States

  • University of North Carolina - Chapel Hill

    RECRUITING

    Chapel Hill, North Carolina, 27599, United States

    Contact Email: •••••@•••••

  • University of Pennsylvania

    RECRUITING

    Philadelphia, Pennsylvania, 19104, United States

  • University of Rochester Medical Center

    RECRUITING

    Rochester, New York, 14618, United States

  • University of Southern California

    RECRUITING

    Los Angeles, California, 90033, United States

  • University of Texas at San Antonio

    RECRUITING

    San Antonio, Texas, 78249, United States

  • Vanderbilt University

    RECRUITING

    Nashville, Tennessee, 37235, United States

  • Virginia Commonwealth University

    RECRUITING

    Richmond, Virginia, 23284, United States

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