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Parkinson's DiseaseNCT04994015

Parkinson's Foundation PD GENEration Genetic Registry

An observational study of Parkinson's Disease, run by Parkinson's Foundation at 70 sites in 3 countries.

Recruiting

Looking for participants now. Contact the study team or a site below to ask about taking part.

Sites and contacts
Official record
Search all trials

Trial summary

Development of a central repository for PD-related genomic data for future research. Read more about this study

Who is it for?
Ages 18 years and older
Conditions the study is for
Parkinson's Disease
What is being tested?
Lab Assay for seven genetic variants for Parkinson's Disease
Type of treatment
Medical device
How many people
35,382 participants
Where
70 sitesin 3 countries
Study dates
20 Dec 2020to 1 Jul 2027
How long will I take part?
30 Days
Phase
Observational
Are there results?
Not yet: the study is under way

Key requirements

Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.

  • Ages 18 years and older
  • All sexes
  • No healthy volunteers
  • Adult, Older adult

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

Who may be able to join

  • 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)
  • 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.

Who cannot join

  • 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

Trial locations and contacts

70 sites in 3 countries. Contact the study team or a site near you to ask about taking part.

Kamalini Ghosh, MS contact

1-800-473-4636

kghosh@parkinson.org

70 sites in 3 countries

United States63 sites, 51 recruiting

  • University of New Mexico

    Albuquerque, New Mexico, 87106

    Anna Tingin, ATingin@salud.unm.edu

    Amanda Deligtisch, MD

    Recruiting

  • University of Michigan

    Ann Arbor, Michigan, 48109

    Active, not recruiting

  • Morehouse College

    Atlanta, Georgia, 30314

    Tamiko Durham, tdurham@msm.edu

    Chantale Branson, MD

    Recruiting

  • University of Colorado Anschutz

    Aurora, Colorado, 80045

    Janet Clarke, janet.clarke@cuanschutz.edu

    Jeanne Feuerstein, MD

    Recruiting

  • Aventura Neurology - Visionary Investigators Network

    Aventura, Florida, 33180

    Active, not recruiting

  • Johns Hopkins

    Baltimore, Maryland, 21218

    Shamera Willoughby, swillou5@jh.edu

    Kelly Mills, MD

    Recruiting

  • University of Alabama Birmingham

    Birmingham, Alabama, 35294

    Active, not recruiting

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

    Boca Raton, Florida, 33486

    Carla Delgado, cdelgado@parkinsonscenter.org

    Karina Weldon, kweldon@parkinsonscenter.org

    Recruiting

  • Massachusetts General Hospital (MGH)

    Boston, Massachusetts, 02114

    Chinyere Obase, cobasi@mgh.harvard.edu

    Anne-Marie Wills, MD

    Recruiting

  • BMC Community Hospital

    Boston, Massachusetts, 02136

    Active, not recruiting

  • Beth Israel Deaconess Medical Center (BIDMC)

    Boston, Massachusetts, 02215

    Mia Lewandowski, mlewand1@bidmc.harvard.edu

    David Simon, MD

    Recruiting

  • MD First Research

    Chandler, Arizona, 85286

    Terminated

  • University of North Carolina - Chapel Hill

    Chapel Hill, North Carolina, 27599

    Hans Nettescheim, pdgenestudy@unc.edu

    Claudia Testa, MD, PhD

    Recruiting

  • Medical University of South Carolina

    Charleston, South Carolina, 29425

    Sandra Wilson, wilsosan@musc.edu

    Gonzalo Revuelta, DO

    Recruiting

  • Atrium Health

    Charlotte, North Carolina, 28207

    Active, not recruiting

  • University of Illinois-Chicago

    Chicago, Illinois, 60607

    Lucia LeBlanc Perez, lleblanc@uic.edu

    Yasaman Kianirad, MD

    Recruiting

  • Rush University

    Chicago, Illinois, 60612

    Marc Rosenbaum, Marc_Rosenbaum@rush.edu

    Jacqueline Vanegas, Jacqueline_Vanegas@rush.edu

    Recruiting

  • University of Chicago

    Chicago, Illinois, 60637

    Hanna Lancerio, hlancerio@bsd.uchicago.edu

    Tao Xie, MD, PhD

    Recruiting

  • University of Cincinnati

    Cincinnati, Ohio, 45221

    Active, not recruiting

  • Case Western Reserve University

    Cleveland, Ohio, 44106

    Eileen Terrell, eileen.terrell@UHhospitals.org

    Steven Gunzler, MD

    Recruiting

  • Cleveland Clinic

    Cleveland, Ohio, 44195

    Mollie Colan, colanm@ccf.org

    Hubert Fernandez, MD

    Recruiting

  • University of Maryland

    College Park, Maryland, 20742

    Rebecca Weimer, rweimer@som.umaryland.edu

    Lisa Shulman

    Recruiting

  • Ohio State University

    Colombus, Ohio, 43210

    Victoria Miller, Victoria.Miller@osumc.edu

    Anna Warner, anna.warner@osumc.edu

    Recruiting

  • Northwestern University

    Evanston, Illinois, 60208

    Karen Williams, k-williams8@northwestern.edu

    Monika Szela, monika.szela@northwestern.edu

    Recruiting

  • University of Connecticut

    Farmington, Connecticut, 06030

    Sheila Thurlow, thurlow@uchc.edu

    Rodrigues Bernardo, MD, PhD

    Recruiting

  • University of Arkansas

    Fayetteville, Arkansas, 72701

    Kennetha Newman, newmankennethal@uams.edu

    Rohit Dhall, MD

    Recruiting

  • University of Florida

    Gainesville, Florida, 32611

    Amanda Fessenden, amanda.fessenden@neurology.ufl.edu

    Irene Andonia Malaty, MD

    Recruiting

  • Struthers Parkinson's Center - HealthPartners Park Nicollet

    Golden Valley, Minnesota, 55427

    Renee Rosenberg, renee.rosenberg@parknicollet.com

    Martha Nance, MD

    Recruiting

  • Hartford Healthcare

    Hartford, Connecticut, 06066

    Active, not recruiting

  • The Queen's Health System

    Honolulu, Hawaii, 96813

    Kenny Thai, kthai@queens.org

    Michiko Bruno, MD

    Recruiting

  • Baylor College of Medicine

    Houston, Texas, 77030

    Silvia Onofre, silvia.onofre@bcm.edu

    Fatima Chavez, fatima.chavez@bcm.edu

    Recruiting

  • The University of Texas Health Science Center at Houston

    Houston, Texas, 77030

    Christian Henry Jackson, Christian.B.HenryJackson@uth.tmc.edu

    Shivika Chandra

    Recruiting

  • Indiana University

    Indianapolis, Indiana, 46202

    Active, not recruiting

  • University of Iowa

    Iowa City, Iowa, 52242

    Heena Olalde, heena-olalde@uiowa.edu

    Annie Killoran, MD, MS

    Recruiting

  • Evergreen Health

    Kirkland, Washington, 98034

    Nasir Hemat, nahemat@evergreenhealthcare.org

    Pinky Agarwal, MD

    Recruiting

  • University of California San Diego (UCSD)

    La Jolla, California, 92093

    Lisa Solomon, 8588225873, ldamron@health.ucsd.edu

    Irene Litvan, MD

    Recruiting

  • Cleveland Clinic Lou Ruvo Center for Brain Health

    Las Vegas, Nevada, 89106

    Liliana Dumitrescu, DUMITRL@ccf.org

    Zoltan Mari

    Recruiting

  • University of Kansas

    Lawrence, Kansas, 66045

    Sarina Fay, sfay2@kumc.edu

    Rajesh Pahwa, MD

    Recruiting

  • University of Kentucky

    Lexington, Kentucky, 40506

    Renee Wagner, rpwagn2@uky.edu

    Tritia Yamasaki, MD, PhD

    Recruiting

  • University of Southern California

    Los Angeles, California, 90033

    Gita Itani, gita.itani@med.usc.edu

    Katherine Wong, MD

    Recruiting

  • University of California Los Angeles

    Los Angeles, California, 90095

    Alexandra Shurlock, Ashurlock@mednet.ucla.edu

    Jeff Bronstein, MD, PhD

    Recruiting

  • University of Miami

    Miami, Florida, 33131

    Melanie Suzette Sousa, mss379@med.miami.edu

    Carlos Singer, MD

    Recruiting

  • Medical College of Wisconsin

    Milwaukee, Wisconsin, 53226

    Victoria Ochotnicky, vochotnicky@mcw.edu

    Kayla Grundman, kgrundman@mcw.edu

    Recruiting

  • Intermountain Health

    Murray, Utah, 84107

    Kenna Farnes, Kenna.Farnes@imail.org

    Kathleen McKee, MD

    Recruiting

  • Vanderbilt University

    Nashville, Tennessee, 37235

    Jacqueline Harris, jacqueline.c.harris@vumc.org

    Tom Davis, MD

    Recruiting

  • Rutgers University

    New Brunswick, New Jersey, 08854

    Active, not recruiting

  • New York University

    New York, New York, 10017

    Active, not recruiting

  • Mount Sinai

    New York, New York, 10029

    Maya Rawal, maya.rawal@mountsinai.org

    Susan Bressman, MD

    Recruiting

  • Columbia University

    New York, New York, 10033

    Amy Arroyo, aa4399@cumc.columbia.edu

    Julian Agin-Liebes, MD

    Recruiting

  • University of Pennsylvania

    Philadelphia, Pennsylvania, 19104

    Neda Almassi, Neda.Almassi@pennmedicine.upenn.edu

    Rebecca Williamson, MD

    Recruiting

  • Thomas Jefferson University

    Philadelphia, Pennsylvania, 19144

    Michelle Rochman, Michelle.Rochman@jefferson.edu

    Tsao-Wei Liang, MD

    Recruiting

  • Barrow Neurological Institute

    Phoenix, Arizona, 85013

    Ruby Rendon, 602-406-4280, ruby.rendon@dignityhealth.org

    Holly Shill, MD

    Recruiting

  • Allegheny Health Network

    Pittsburgh, Pennsylvania, 15212

    Maureen Boms, Maureen.Boms@ahn.org

    Sushma Kola

    Recruiting

  • Maine Medical Center

    Portland, Maine, 04102

    Michael Kleinmann

    Not yet recruiting

  • Oregon Health and Science University

    Portland, Oregon, 97239

    Emily Leonard, PDResearch@ohsu.edu

    Joseph Quinn, MD

    Recruiting

  • Stanford University

    Redwood City, California, 94063

    Michaela Pelta, pelta@stanford.edu

    Hengameh Zahed

    Recruiting

  • Virginia Commonwealth University

    Richmond, Virginia, 23284

    Virginia Norris, virginia.norris@vcuhealth.org

    Matthew Barrett, MD

    Recruiting

  • University of Rochester Medical Center

    Rochester, New York, 14618

    Jill Lowell, movement_research@urmc.rochester.edu

    Blanca Y. Valdovinos, MD

    Recruiting

  • University of Texas at San Antonio

    San Antonio, Texas, 78249

    Carolyn Paiz, paizc@uthscsa.edu

    Victoria Carranza, carranzav@uthscsa.edu

    Recruiting

  • University of California San Francisco (UCSF)

    San Francisco, California, 94143

    Aaron Daley, aaron.daley@ucsf.edu

    Jill Ostrem, MD

    Recruiting

  • Louisiana State University

    Shreveport, Louisiana, 71103

    Ty Martinez, ty.martinez@lsuhs.edu

    Elizabeth Disbrow, PhD

    Recruiting

  • Inland Northwest Research

    Spokane, Washington, 99202

    October Strange, ostrange@inwresearch.com

    Jason Aldred, MD

    Recruiting

  • Cleveland Clinic Weston

    Weston, Florida, 33331

    Active, not recruiting

Other trials in United States

Canada4 sites, 3 recruiting

  • University of Alberta

    Edmonton, Alberta, T5J 4P6

    Frances Cheung, fkcheung@ualberta.ca

    Janis Miyasaki, MD

    Recruiting

  • McGill University

    Montreal, Quebec, H3A 0G4

    Active, not recruiting

  • Toronto Western Hospital

    Toronto, Ontario

    Nazish Ahmed, nazish.ahmed@uhnresearch.ca

    Connie Marras, MD, PhD

    Recruiting

  • University of British Columbia

    Vancouver, British Columbia, V6T 1Z3

    Sahib Dhaliwal, sahib.dhaliwal@ubc.ca

    Silke Appel-Cresswell

    Recruiting

Other trials in Canada

Israel3 sites, 3 recruiting

  • Shaare Zedek Medical Center

    Jerusalem

    Hadar Iluz, hadaril@szmc.org.il

    Gilad Yahalom, MD

    Recruiting

  • Chaim Sheba Medical Center

    Ramat Gan

    Tal Bar Dor, Tal.Bardor@sheba.health.gov.il

    Adi Saar, Adi.Saar@sheba.health.gov.il

    Recruiting

  • Tel Aviv Sourasky Medical Center

    Tel Aviv, 64239

    Haleli Sharir, halelis@tlvmc.gov.il

    Meirav Kalish, meiravk@tlvmc.gov.il

    Recruiting

Other trials in Israel

About this study

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

Read the 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.

Being tested
Lab Assay for seven genetic variants for Parkinson's Disease
Keywords
Genetics, Genetic Counseling, Whole Genome Sequencing
Medical subject headings
Parkinson Disease

What participants receive

What participants receive. In a randomised study each person is assigned to one group by chance.

  • Lab Assay for seven genetic variants for Parkinson's DiseaseDevice

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

What is being measured

The primary outcome is the main question the study is designed to answer.

  1. Prevalence of Parkinson's related genetic mutations in an convenience cohort

    Identify people with Parkinson's who have genetic mutations to advance basic science and clinical research.

    Measured: 6 months

  2. Educating people with Parkinson's of their genetic mutation status through genetic testing and counseling

    People who are informed of their genetic status may be empowered to learn more about their disease and participant in clinical research.

    Measured: 6 months

Timeline

From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.

  1. First posted6 Aug 2021
  2. Study start20 Dec 2020
  3. Primary completion1 Jul 2027 (estimated)
  4. Study completion1 Jul 2027 (estimated)

Resources

More details

For doctors and researchers: how the study is designed, who runs it, and its registry IDs.

Study design
Study type
Observational
Observational model
Case only
Time perspective
Cross-sectional
Enrolment
35,382 participants (estimated)
Target duration
30 Days
IDs, dates and publications
ClinicalTrials.gov ID
NCT04994015
Sponsor's protocol ID
PDGENE-PF
Status last verified
Sep 2026
First submitted
29 Jul 2021
Last updated
8 Sep 2026
Results posted
No
Data monitoring committee
No
FDA-regulated drug
No
FDA-regulated device
No

Questions about this trial

What is this clinical trial studying?

An observational study of Parkinson's Disease, run by Parkinson's Foundation at 70 sites in 3 countries.

The full registered description is in the About this study section and the official record.

Who may be eligible to take part?

The sponsor lists 7 inclusion and 5 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.

Is this clinical trial currently recruiting?

The record says: looking for participants now, as of the sponsor's last update on 8 Sep 2026. Status can change between updates, so confirm with the study contact before making plans.

Where is the study taking place?

The record lists 70 sites in United States, Canada, Israel. Whether a site is taking part right now should be confirmed with that site. See every site.

What are the possible benefits and risks?

They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.

Are results available for this study?

This study is still under way. Results are not available in the source record yet.

How can a doctor refer a patient or contact the research team?

Contact Kamalini Ghosh, MS (1-800-473-4636, kghosh@parkinson.org), or a site near the patient. AzTrials does not enrol participants or take referrals.

What does the primary outcome measure?

Prevalence of Parkinson's related genetic mutations in an convenience cohort (time frame: 6 months). The study lists 2 primary outcomes in all. It is what the study was designed to measure, not a finding.

Where can I read the original study information?

On the ClinicalTrials.gov record for NCT04994015.

Does a listing mean the treatment is approved or proven to work?

No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.

How often is this information updated?

AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 8 Sep 2026.

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