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

May, 2025

Completion date

Jul 1, 2026

Anticipated

Primary completion date

Jun 30, 2026

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

25000 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

University of Alabama Birmingham

Recruiting

Birmingham, Alabama, United States, 35294

Contacts

Fariba Rahimi

faribarahimi@uabmc.edu

Principal Investigator:

Marissa Dean, MD

Barrow Neurological Institute

Recruiting

Phoenix, Arizona, United States, 85013

Contacts

Caitlin Goodman

caitlin.goodman@commonspirit.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

858-822-5873 ldamron@health.ucsd.edu

Principal Investigator:

Irene Litvan, 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

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

Hartford Healthcare

Recruiting

Hartford, Connecticut, United States, 06066

Contacts

Brandon Canty

brandon.canty@hhchealth.org

Principal Investigator:

Joy Antonelle DeMarcaida, MD

Aventura Neurology - Visionary Investigators Network

Recruiting

Aventura, Florida, United States, 33180

Contacts

Nicole Rios

nrios@vintrials.com

Principal Investigator:

Julie Schwartzbard, MD

Parkinson's Disease & Movement Disorder Center of Boca Raton

Recruiting

Boca Raton, Florida, United States, 33486

Contacts

Karla Arias

karias@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

Oriana Tarabay

oxt185@med.miami.edu

Principal Investigator:

Carlos Singer, MD

Cleveland Clinic Weston

Recruiting

Weston, Florida, United States, 33331

Contacts

Laura Duarte

duartel2@ccf.org

Principal Investigator:

Tarannum Khan, 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

Malika Faouzi

mfaouzi@queens.org

Principal Investigator:

Michiko Bruno, MD

University of Illinois-Chicago

Recruiting

Chicago, Illinois, United States, 60607

Contacts

Vijay Palakuzhy

vpalakz@uic.edu

Principal Investigator:

Yasaman Kianirad, MD

Rush University

Recruiting

Chicago, Illinois, United States, 60612

Contacts

Nathan Krinickas

Nathan_Krinickas@rush.edu

Jacqueline Vanegas

Jacqueline_Vanegas@rush.edu

Principal Investigator:

Deborah Hall, MD

University of Chicago

Recruiting

Chicago, Illinois, United States, 60637

Contacts

Tomas Mercado

tmercado@bsd.uchicago.edu

Principal Investigator:

Tao Xie, MD, PhD

Northwestern University

Recruiting

Evanston, Illinois, United States, 60208

Contacts

Rachel Leewandowski

rachel.lewandowski@northwestern.edu

Principal Investigator:

Niccolo Mencacci, MD

Indiana University

Recruiting

Indianapolis, Indiana, United States, 46202

Contacts

Lauren Perrey-Moore

lperrey@iupui.edu

Principal Investigator:

Elizabeth Zauber, 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

April Langhammerr

alanghammer@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

Mackenzie Williams

mackenzie.williams@lsuhs.edu

Principal Investigator:

Elizabeth Disbrow, PhD

Johns Hopkins

Recruiting

Baltimore, Maryland, United States, 21218

Contacts

Ebubechukwu Onyinanya

eonyina1@jhu.edu

Principal Investigator:

Kelly Mills, MD

University of Maryland

Recruiting

College Park, Maryland, United States, 20742

Contacts

Rebecca Weimer

rweimer@som.umaryland.edu

Massachusetts General Hospital (MGH)

Recruiting

Boston, Massachusetts, United States, 02114

Contacts

Vanessa Ibrahim

vibrahim@mgh.harvard.edu

Principal Investigator:

Anne-Marie Wills, MD

BMC Community Hospital

Recruiting

Boston, Massachusetts, United States, 02136

Contacts

Madhuri Sangam

Madhuri.Sangam@bmc.org

Principal Investigator:

Anna Hohler, MD

Beth Israel Deaconess Medical Center (BIDMC)

Recruiting

Boston, Massachusetts, United States, 02215

Contacts

Jacqueline Forbes

jforbes1@bidmc.harvard.edu

Principal Investigator:

David Simon, MD

Struthers Parkinson's Center - HealthPartners Park Nicollet

Recruiting

Golden Valley, Minnesota, United States, 55427

Contacts

Taylor Billeadeau

Taylor.R.Billeadeau@HealthPartners.Com

Principal Investigator:

Martha Nance, MD

Rutgers University

Recruiting

New Brunswick, New Jersey, United States, 08854

Contacts

Edward Scot Stenroos, MD

stenroos@rwjms.rutgers.edu

Principal Investigator:

Gian Pal

University of New Mexico

Recruiting

Albuquerque, New Mexico, United States, 87106

Contacts

Anna Tingin

ATingin@salud.unm.edu

Principal Investigator:

Amanda Deligtisch, MD

New York University

Recruiting

New York, New York, United States, 10017

Contacts

Kelly Astudillo

kelly.astudillo@nyulangone.org

Principal Investigator:

Giulietta Riboldi, MD, PhD

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

Alexander Haimovich

ah3912@cumc.columbia.edu

Principal Investigator:

Linn Katus, DO

University of North Carolina - Chapel Hill

Recruiting

Chapel Hill, North Carolina, United States, 27599

Contacts

Hans Nettescheim

Hans_Nettesheim@med.unc.edu

Principal Investigator:

Claudia Testa, MD, PhD

Atrium Health

Recruiting

Charlotte, North Carolina, United States, 28207

Contacts

Gina M'Buyamba

gina.mbuyamba@atriumhealth.org

Principal Investigator:

Nicholas Fleming, MD

University of Cincinnati

Recruiting

Cincinnati, Ohio, United States, 45221

Contacts

Kelly DeLano

delanoky@ucmail.uc.edu

Principal Investigator:

Emily Hill, MD

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

Jerrod Cook

cookj6@ccf.org

Principal Investigator:

Hubert Fernandez, MD

Ohio State University

Recruiting

Columbus, Ohio, United States, 43210

Contacts

Kate Ambrogi

katherine.ambrogi@osumc.edu

Principal Investigator:

Ariane Park, MD, PhD

Oregon Health and Science University

Recruiting

Portland, Oregon, United States, 97239

Contacts

Emily Leonard

leonarde@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 Roachman

michelle.roachman@jefferson.edu

Principal Investigator:

Tsao-Wei Liang, MD

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

Principal Investigator:

Nora Vanegas, MD

University of Texas at San Antonio

Recruiting

San Antonio, Texas, United States, 78249

Contacts

Carolyn Paiz

paizc@uthscsa.edu

Omalys Biggs Rodriguez

biggsrodrigu@uthscsa.edu

Principal Investigator:

Oleni Okeanis Vaou, MD

Intermountain Health

Recruiting

Murray, Utah, United States, 84107

Contacts

Nic Unsworth

Nic.Unsworth@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

Amanda Kiefer

akiefer@inwresearch.com

Principal Investigator:

Jason Aldred, MD

Medical College of Wisconsin

Recruiting

Milwaukee, Wisconsin, United States, 53226

Contacts

Jordan Bayola

jbayola@mcw.edu

Principal Investigator:

Karen Blindauer, MD

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

May 21, 2025

Last verified

May, 2025

Keywords

Genetics
Genetic Counseling
Whole Genome Sequencing

Trial information was received from ClinicalTrials.gov and was last updated on 2026-09-08. This information was provided to ClinicalTrials.gov by Parkinson's Foundation on 2025-05-21.