Recruiting

Genetic RegistryParkinson's Foundation PD GENEration Genetic Registry

Sponsor:

Parkinson's Foundation

Code:

NCT04994015

Conditions

Parkinson's Disease

Eligibility Criteria

Sex: All

Age: 18+

Healthy Volunteers: Not accepted

Interventions

Lab Assay for seven genetic variants for Parkinson's Disease

Study Details

Brief summary:

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

Conditions

Parkinson's Disease

Study ID

NCT04994015

Start date

Dec 20, 2020

Status verified date

Sep, 2026

Completion date

Jul 1, 2027

Anticipated

Primary completion date

Jul 1, 2027

Anticipated

Eligibility Criteria

Sex: All

Age: 18+

Healthy Volunteers: Not 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

Study Design

Enrollment

35382 participants

Anticipated

Interventions and Outcome Measures

Interventions

Lab Assay for seven genetic variants for Parkinson's Disease

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

Primary outcome measure

Prevalence of Parkinson's related genetic mutations in an convenience cohort [ Time Frame: 6 months ]
Educating people with Parkinson's of their genetic mutation status through genetic testing and counseling [ Time Frame: 6 months ]

Central Contacts and Locations

Central contacts

Kamalini Ghosh, MS

1-800-473-4636 kghosh@parkinson.org

Locations

Barrow Neurological Institute

Recruiting

Phoenix, Arizona, United States, 85013

Contacts

Ruby Rendon

602-406-4280 ruby.rendon@dignityhealth.org

Principal Investigator:

Holly Shill, MD

University of Arkansas

Recruiting

Fayetteville, Arkansas, United States, 72701

Contacts

Kennetha Newman

newmankennethal@uams.edu

Principal Investigator:

Rohit Dhall, MD

University of California San Diego (UCSD)

Recruiting

La Jolla, California, United States, 92093

Contacts

Lisa Solomon

8588225873 ldamron@health.ucsd.edu

Principal Investigator:

Irene Litvan, MD

University of Southern California

Recruiting

Los Angeles, California, United States, 90033

Contacts

Gita Itani

gita.itani@med.usc.edu

Principal Investigator:

Katherine Wong, MD

University of California Los Angeles

Recruiting

Los Angeles, California, United States, 90095

Contacts

Alexandra Shurlock

Ashurlock@mednet.ucla.edu

Principal Investigator:

Jeff Bronstein, MD, PhD

Stanford University

Recruiting

Redwood City, California, United States, 94063

Contacts

Michaela Pelta

pelta@stanford.edu

Principal Investigator:

Hengameh Zahed

University of California San Francisco (UCSF)

Recruiting

San Francisco, California, United States, 94143

Contacts

Aaron Daley

aaron.daley@ucsf.edu

Principal Investigator:

Jill Ostrem, MD

University of Colorado Anschutz

Recruiting

Aurora, Colorado, United States, 80045

Contacts

Janet Clarke

janet.clarke@cuanschutz.edu

Principal Investigator:

Jeanne Feuerstein, MD

University of Connecticut

Recruiting

Farmington, Connecticut, United States, 06030

Contacts

Sheila Thurlow

thurlow@uchc.edu

Principal Investigator:

Rodrigues Bernardo, MD, PhD

Parkinson's Disease & Movement Disorder Center of Boca Raton

Recruiting

Boca Raton, Florida, United States, 33486

Contacts

Carla Delgado

cdelgado@parkinsonscenter.org

Karina Weldon

kweldon@parkinsonscenter.org

Principal Investigator:

Stuart Isaacson, MD

University of Florida

Recruiting

Gainesville, Florida, United States, 32611

Contacts

Amanda Fessenden

amanda.fessenden@neurology.ufl.edu

Principal Investigator:

Irene Andonia Malaty, MD

University of Miami

Recruiting

Miami, Florida, United States, 33131

Contacts

Melanie Suzette Sousa

mss379@med.miami.edu

Principal Investigator:

Carlos Singer, MD

Morehouse College

Recruiting

Atlanta, Georgia, United States, 30314

Contacts

Tamiko Durham

tdurham@msm.edu

Principal Investigator:

Chantale Branson, MD

The Queen's Health System

Recruiting

Honolulu, Hawaii, United States, 96813

Contacts

Kenny Thai

kthai@queens.org

Principal Investigator:

Michiko Bruno, MD

University of Illinois-Chicago

Recruiting

Chicago, Illinois, United States, 60607

Contacts

Lucia LeBlanc Perez

lleblanc@uic.edu

Principal Investigator:

Yasaman Kianirad, MD

Rush University

Recruiting

Chicago, Illinois, United States, 60612

Contacts

Marc Rosenbaum

Marc_Rosenbaum@rush.edu

Jacqueline Vanegas

Jacqueline_Vanegas@rush.edu

Principal Investigator:

Deborah Hall, MD

University of Chicago

Recruiting

Chicago, Illinois, United States, 60637

Contacts

Hanna Lancerio

hlancerio@bsd.uchicago.edu

Principal Investigator:

Tao Xie, MD, PhD

Northwestern University

Recruiting

Evanston, Illinois, United States, 60208

Contacts

Karen Williams

k-williams8@northwestern.edu

Monika Szela

monika.szela@northwestern.edu

Principal Investigator:

Niccolo Mencacci, MD

University of Iowa

Recruiting

Iowa City, Iowa, United States, 52242

Contacts

Heena Olalde

heena-olalde@uiowa.edu

Principal Investigator:

Annie Killoran, MD, MS

University of Kansas

Recruiting

Lawrence, Kansas, United States, 66045

Contacts

Sarina Fay

sfay2@kumc.edu

Principal Investigator:

Rajesh Pahwa, MD

University of Kentucky

Recruiting

Lexington, Kentucky, United States, 40506

Contacts

Renee Wagner

rpwagn2@uky.edu

Principal Investigator:

Tritia Yamasaki, MD, PhD

Louisiana State University

Recruiting

Shreveport, Louisiana, United States, 71103

Contacts

Ty Martinez

ty.martinez@lsuhs.edu

Principal Investigator:

Elizabeth Disbrow, PhD

Johns Hopkins

Recruiting

Baltimore, Maryland, United States, 21218

Contacts

Shamera Willoughby

swillou5@jh.edu

Principal Investigator:

Kelly Mills, MD

University of Maryland

Recruiting

College Park, Maryland, United States, 20742

Contacts

Rebecca Weimer

rweimer@som.umaryland.edu

Principal Investigator:

Lisa Shulman

Massachusetts General Hospital (MGH)

Recruiting

Boston, Massachusetts, United States, 02114

Contacts

Chinyere Obase

cobasi@mgh.harvard.edu

Principal Investigator:

Anne-Marie Wills, MD

Beth Israel Deaconess Medical Center (BIDMC)

Recruiting

Boston, Massachusetts, United States, 02215

Contacts

Mia Lewandowski

mlewand1@bidmc.harvard.edu

Principal Investigator:

David Simon, MD

Struthers Parkinson's Center - HealthPartners Park Nicollet

Recruiting

Golden Valley, Minnesota, United States, 55427

Contacts

Renee Rosenberg

renee.rosenberg@parknicollet.com

Principal Investigator:

Martha Nance, MD

Cleveland Clinic Lou Ruvo Center for Brain Health

Recruiting

Las Vegas, Nevada, United States, 89106

Contacts

Liliana Dumitrescu

DUMITRL@ccf.org

Principal Investigator:

Zoltan Mari

University of New Mexico

Recruiting

Albuquerque, New Mexico, United States, 87106

Contacts

Anna Tingin

ATingin@salud.unm.edu

Principal Investigator:

Amanda Deligtisch, MD

Mount Sinai

Recruiting

New York, New York, United States, 10029

Contacts

Maya Rawal

maya.rawal@mountsinai.org

Principal Investigator:

Susan Bressman, MD

Columbia University

Recruiting

New York, New York, United States, 10033

Contacts

Amy Arroyo

aa4399@cumc.columbia.edu

Principal Investigator:

Julian Agin-Liebes, MD

University of Rochester Medical Center

Recruiting

Rochester, New York, United States, 14618

Contacts

Jill Lowell

movement_research@urmc.rochester.edu

Principal Investigator:

Blanca Y. Valdovinos, MD

University of North Carolina - Chapel Hill

Recruiting

Chapel Hill, North Carolina, United States, 27599

Contacts

Hans Nettescheim

pdgenestudy@unc.edu

Principal Investigator:

Claudia Testa, MD, PhD

Case Western Reserve University

Recruiting

Cleveland, Ohio, United States, 44106

Contacts

Eileen Terrell

eileen.terrell@UHhospitals.org

Principal Investigator:

Steven Gunzler, MD

Cleveland Clinic

Recruiting

Cleveland, Ohio, United States, 44195

Contacts

Mollie Colan

colanm@ccf.org

Principal Investigator:

Hubert Fernandez, MD

Ohio State University

Recruiting

Colombus, Ohio, United States, 43210

Contacts

Victoria Miller

Victoria.Miller@osumc.edu

Anna Warner

anna.warner@osumc.edu

Principal Investigator:

Ariane Park, MD, PhD

Oregon Health and Science University

Recruiting

Portland, Oregon, United States, 97239

Contacts

Emily Leonard

PDResearch@ohsu.edu

Principal Investigator:

Joseph Quinn, MD

University of Pennsylvania

Recruiting

Philadelphia, Pennsylvania, United States, 19104

Contacts

Neda Almassi

Neda.Almassi@pennmedicine.upenn.edu

Principal Investigator:

Rebecca Williamson, MD

Thomas Jefferson University

Recruiting

Philadelphia, Pennsylvania, United States, 19144

Contacts

Michelle Rochman

Michelle.Rochman@jefferson.edu

Principal Investigator:

Tsao-Wei Liang, MD

Allegheny Health Network

Recruiting

Pittsburgh, Pennsylvania, United States, 15212

Contacts

Maureen Boms

Maureen.Boms@ahn.org

Principal Investigator:

Sushma Kola

Medical University of South Carolina

Recruiting

Charleston, South Carolina, United States, 29425

Contacts

Sandra Wilson

wilsosan@musc.edu

Principal Investigator:

Gonzalo Revuelta, DO

Vanderbilt University

Recruiting

Nashville, Tennessee, United States, 37235

Contacts

Jacqueline Harris

jacqueline.c.harris@vumc.org

Principal Investigator:

Tom Davis, MD

Baylor College of Medicine

Recruiting

Houston, Texas, United States, 77030

Contacts

Silvia Onofre

silvia.onofre@bcm.edu

Fatima Chavez

fatima.chavez@bcm.edu

Principal Investigator:

Jamie Fong, MD

The University of Texas Health Science Center at Houston

Recruiting

Houston, Texas, United States, 77030

Contacts

Christian Henry Jackson

Christian.B.HenryJackson@uth.tmc.edu

Principal Investigator:

Shivika Chandra

University of Texas at San Antonio

Recruiting

San Antonio, Texas, United States, 78249

Contacts

Carolyn Paiz

paizc@uthscsa.edu

Victoria Carranza

carranzav@uthscsa.edu

Principal Investigator:

Oleni Okeanis Vaou, MD

Intermountain Health

Recruiting

Murray, Utah, United States, 84107

Contacts

Kenna Farnes

Kenna.Farnes@imail.org

Principal Investigator:

Kathleen McKee, MD

Virginia Commonwealth University

Recruiting

Richmond, Virginia, United States, 23284

Contacts

Virginia Norris

virginia.norris@vcuhealth.org

Principal Investigator:

Matthew Barrett, MD

Evergreen Health

Recruiting

Kirkland, Washington, United States, 98034

Contacts

Nasir Hemat

nahemat@evergreenhealthcare.org

Principal Investigator:

Pinky Agarwal, MD

Inland Northwest Research

Recruiting

Spokane, Washington, United States, 99202

Contacts

October Strange

ostrange@inwresearch.com

Principal Investigator:

Jason Aldred, MD

Medical College of Wisconsin

Recruiting

Milwaukee, Wisconsin, United States, 53226

Contacts

Victoria Ochotnicky

vochotnicky@mcw.edu

Kayla Grundman

kgrundman@mcw.edu

Principal Investigator:

Karen Blindauer, MD

University of Alberta

Recruiting

Edmonton, Alberta, Canada, T5J 4P6

Contacts

Frances Cheung

fkcheung@ualberta.ca

Principal Investigator:

Janis Miyasaki, MD

University of British Columbia

Recruiting

Vancouver, British Columbia, Canada, V6T 1Z3

Contacts

Sahib Dhaliwal

sahib.dhaliwal@ubc.ca

Principal Investigator:

Silke Appel-Cresswell

Toronto Western Hospital

Recruiting

Toronto, Ontario, Canada

Contacts

Nazish Ahmed

nazish.ahmed@uhnresearch.ca

Principal Investigator:

Connie Marras, MD, PhD

More Information

Sponsor

Parkinson's Foundation

Last update posted

Sep 8, 2026

Last verified

Sep, 2026

Keywords

Genetics
Genetic Counseling
Whole Genome Sequencing

Trial information was received from ClinicalTrials.gov and was last updated on 2026-09-27. This information was provided to ClinicalTrials.gov by Parkinson's Foundation on 2026-09-08. Recruitment status is synced daily from ClinicalTrials.gov and may not reflect the sponsor's current status. Confirm during your call.