Recruiting · registry status

Building a genetic research resource for Parkinson’s

Researchers collect genetic information related to Parkinson’s in a central resource for future studies.

Learning by observing or collecting information · Study reference: NCT04994015

Plain-language introduction written with AI from the registry; not independently checked by a clinician. Read the original details below ↓

Open the official registry record ↗

Who can join?

Age 18 years and over · Does not accept healthy volunteers

These are starting points, not the full rules. The research team can tell you whether the study is right for your situation.

Read all the rules for taking part

Sex eligibility reported by registry: all

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

Full study name & original research details

Official study title

Parkinson's Foundation PD GENEration Genetic Registry

Original description

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

Further description from the registry

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 reported: Parkinson's Disease

Study type: Observational
Interventions: Lab Assay for seven genetic variants for Parkinson's Disease
Phases: Not reported
Sponsor: Parkinson's Foundation
Start date reported by registry: 2020-12-20 (actual)

Registry updated: 2026-09-08 · Status last verified by the registry submitter: 2026-09

Registry records retrieved 2026-10-11 (UTC). Individual records may have older updates. Recruitment and eligibility must be confirmed with the study team.

Contact the research team

Public study contacts supplied to the registry. Ask whether recruitment is still open and what participation involves.

Kamalini Ghosh, MS · 1-800-473-4636 · kghosh@parkinson.org

Study locations

Site status can differ from overall study status. “Status not reported” means local availability needs confirmation. Remote participation and travel arrangements must be checked with the team.

University of Alabama Birmingham

Birmingham, Alabama, United States

Active not recruiting

MD First Research

Chandler, Arizona, United States

Terminated

Barrow Neurological Institute

Phoenix, Arizona, United States

Recruiting

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

Holly Shill, MD

University of Arkansas

Fayetteville, Arkansas, United States

Recruiting

Kennetha Newman · newmankennethal@uams.edu

Rohit Dhall, MD

University of California San Diego (UCSD)

La Jolla, California, United States

Recruiting

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

Irene Litvan, MD

University of Southern California

Los Angeles, California, United States

Recruiting

Gita Itani · gita.itani@med.usc.edu

Katherine Wong, MD

University of California Los Angeles

Los Angeles, California, United States

Recruiting

Alexandra Shurlock · Ashurlock@mednet.ucla.edu

Jeff Bronstein, MD, PhD

Stanford University

Redwood City, California, United States

Recruiting

Michaela Pelta · pelta@stanford.edu

Hengameh Zahed

University of California San Francisco (UCSF)

San Francisco, California, United States

Recruiting

Aaron Daley · aaron.daley@ucsf.edu

Jill Ostrem, MD

University of Colorado Anschutz

Aurora, Colorado, United States

Recruiting

Janet Clarke · janet.clarke@cuanschutz.edu

Jeanne Feuerstein, MD

University of Connecticut

Farmington, Connecticut, United States

Recruiting

Sheila Thurlow · thurlow@uchc.edu

Rodrigues Bernardo, MD, PhD

Hartford Healthcare

Hartford, Connecticut, United States

Active not recruiting

Aventura Neurology - Visionary Investigators Network

Aventura, Florida, United States

Active not recruiting

Parkinson's Disease & Movement Disorder Center of Boca Raton

Boca Raton, Florida, United States

Recruiting

Carla Delgado · cdelgado@parkinsonscenter.org

Karina Weldon · kweldon@parkinsonscenter.org

Stuart Isaacson, MD

University of Florida

Gainesville, Florida, United States

Recruiting

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

Irene Andonia Malaty, MD

University of Miami

Miami, Florida, United States

Recruiting

Melanie Suzette Sousa · mss379@med.miami.edu

Carlos Singer, MD

Ihtsham Haq, MD

Henry Moore, MD

Cleveland Clinic Weston

Weston, Florida, United States

Active not recruiting

Morehouse College

Atlanta, Georgia, United States

Recruiting

Tamiko Durham · tdurham@msm.edu

Chantale Branson, MD

The Queen's Health System

Honolulu, Hawaii, United States

Recruiting

Kenny Thai · kthai@queens.org

Michiko Bruno, MD

Fay Gao, MD

University of Illinois-Chicago

Chicago, Illinois, United States

Recruiting

Lucia LeBlanc Perez · lleblanc@uic.edu

Yasaman Kianirad, MD

Rush University

Chicago, Illinois, United States

Recruiting

Marc Rosenbaum · Marc_Rosenbaum@rush.edu

Jacqueline Vanegas · Jacqueline_Vanegas@rush.edu

Deborah Hall, MD

University of Chicago

Chicago, Illinois, United States

Recruiting

Hanna Lancerio · hlancerio@bsd.uchicago.edu

Tao Xie, MD, PhD

Northwestern University

Evanston, Illinois, United States

Recruiting

Karen Williams · k-williams8@northwestern.edu

Monika Szela · monika.szela@northwestern.edu

Niccolo Mencacci, MD

Indiana University

Indianapolis, Indiana, United States

Active not recruiting

University of Iowa

Iowa City, Iowa, United States

Recruiting

Heena Olalde · heena-olalde@uiowa.edu

Annie Killoran, MD, MS

University of Kansas

Lawrence, Kansas, United States

Recruiting

Sarina Fay · sfay2@kumc.edu

Rajesh Pahwa, MD

University of Kentucky

Lexington, Kentucky, United States

Recruiting

Renee Wagner · rpwagn2@uky.edu

Tritia Yamasaki, MD, PhD

Louisiana State University

Shreveport, Louisiana, United States

Recruiting

Ty Martinez · ty.martinez@lsuhs.edu

Elizabeth Disbrow, PhD

Maine Medical Center

Portland, Maine, United States

Not yet recruiting

Michael Kleinmann

Johns Hopkins

Baltimore, Maryland, United States

Recruiting

Shamera Willoughby · swillou5@jh.edu

Kelly Mills, MD

University of Maryland

College Park, Maryland, United States

Recruiting

Rebecca Weimer · rweimer@som.umaryland.edu

Lisa Shulman

Massachusetts General Hospital (MGH)

Boston, Massachusetts, United States

Recruiting

Chinyere Obase · cobasi@mgh.harvard.edu

Anne-Marie Wills, MD

BMC Community Hospital

Boston, Massachusetts, United States

Active not recruiting

Beth Israel Deaconess Medical Center (BIDMC)

Boston, Massachusetts, United States

Recruiting

Mia Lewandowski · mlewand1@bidmc.harvard.edu

David Simon, MD

University of Michigan

Ann Arbor, Michigan, United States

Active not recruiting

Struthers Parkinson's Center - HealthPartners Park Nicollet

Golden Valley, Minnesota, United States

Recruiting

Renee Rosenberg · renee.rosenberg@parknicollet.com

Martha Nance, MD

Cleveland Clinic Lou Ruvo Center for Brain Health

Las Vegas, Nevada, United States

Recruiting

Liliana Dumitrescu · DUMITRL@ccf.org

Zoltan Mari

Rutgers University

New Brunswick, New Jersey, United States

Active not recruiting

University of New Mexico

Albuquerque, New Mexico, United States

Recruiting

Anna Tingin · ATingin@salud.unm.edu

Amanda Deligtisch, MD

New York University

New York, New York, United States

Active not recruiting

Mount Sinai

New York, New York, United States

Recruiting

Maya Rawal · maya.rawal@mountsinai.org

Susan Bressman, MD

Columbia University

New York, New York, United States

Recruiting

Amy Arroyo · aa4399@cumc.columbia.edu

Julian Agin-Liebes, MD

University of Rochester Medical Center

Rochester, New York, United States

Recruiting

Jill Lowell · movement_research@urmc.rochester.edu

Blanca Y. Valdovinos, MD

University of North Carolina - Chapel Hill

Chapel Hill, North Carolina, United States

Recruiting

Hans Nettescheim · pdgenestudy@unc.edu

Claudia Testa, MD, PhD

Atrium Health

Charlotte, North Carolina, United States

Active not recruiting

University of Cincinnati

Cincinnati, Ohio, United States

Active not recruiting

Case Western Reserve University

Cleveland, Ohio, United States

Recruiting

Eileen Terrell · eileen.terrell@UHhospitals.org

Steven Gunzler, MD

Cleveland Clinic

Cleveland, Ohio, United States

Recruiting

Mollie Colan · colanm@ccf.org

Hubert Fernandez, MD

Ohio State University

Colombus, Ohio, United States

Recruiting

Victoria Miller · Victoria.Miller@osumc.edu

Anna Warner · anna.warner@osumc.edu

Ariane Park, MD, PhD

Oregon Health and Science University

Portland, Oregon, United States

Recruiting

Emily Leonard · PDResearch@ohsu.edu

Joseph Quinn, MD

University of Pennsylvania

Philadelphia, Pennsylvania, United States

Recruiting

Neda Almassi · Neda.Almassi@pennmedicine.upenn.edu

Rebecca Williamson, MD

Thomas Jefferson University

Philadelphia, Pennsylvania, United States

Recruiting

Michelle Rochman · Michelle.Rochman@jefferson.edu

Tsao-Wei Liang, MD

Allegheny Health Network

Pittsburgh, Pennsylvania, United States

Recruiting

Maureen Boms · Maureen.Boms@ahn.org

Sushma Kola

Medical University of South Carolina

Charleston, South Carolina, United States

Recruiting

Sandra Wilson · wilsosan@musc.edu

Gonzalo Revuelta, DO

Vanderbilt University

Nashville, Tennessee, United States

Recruiting

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

Tom Davis, MD

Baylor College of Medicine

Houston, Texas, United States

Recruiting

Silvia Onofre · silvia.onofre@bcm.edu

Fatima Chavez · fatima.chavez@bcm.edu

Jamie Fong, MD

The University of Texas Health Science Center at Houston

Houston, Texas, United States

Recruiting

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

Shivika Chandra

University of Texas at San Antonio

San Antonio, Texas, United States

Recruiting

Carolyn Paiz · paizc@uthscsa.edu

Victoria Carranza · carranzav@uthscsa.edu

Oleni Okeanis Vaou, MD

Intermountain Health

Murray, Utah, United States

Recruiting

Kenna Farnes · Kenna.Farnes@imail.org

Kathleen McKee, MD

Virginia Commonwealth University

Richmond, Virginia, United States

Recruiting

Virginia Norris · virginia.norris@vcuhealth.org

Matthew Barrett, MD

Evergreen Health

Kirkland, Washington, United States

Recruiting

Nasir Hemat · nahemat@evergreenhealthcare.org

Pinky Agarwal, MD

Inland Northwest Research

Spokane, Washington, United States

Recruiting

October Strange · ostrange@inwresearch.com

Jason Aldred, MD

Medical College of Wisconsin

Milwaukee, Wisconsin, United States

Recruiting

Victoria Ochotnicky · vochotnicky@mcw.edu

Kayla Grundman · kgrundman@mcw.edu

Karen Blindauer, MD

University of Alberta

Edmonton, Alberta, Canada

Recruiting

Frances Cheung · fkcheung@ualberta.ca

Janis Miyasaki, MD

University of British Columbia

Vancouver, British Columbia, Canada

Recruiting

Sahib Dhaliwal · sahib.dhaliwal@ubc.ca

Silke Appel-Cresswell

Toronto Western Hospital

Toronto, Ontario, Canada

Recruiting

Nazish Ahmed · nazish.ahmed@uhnresearch.ca

Connie Marras, MD, PhD

McGill University

Montreal, Quebec, Canada

Active not recruiting

Shaare Zedek Medical Center

Jerusalem, Israel

Recruiting

Hadar Iluz · hadaril@szmc.org.il

Gilad Yahalom, MD

Chaim Sheba Medical Center

Ramat Gan, Israel

Recruiting

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

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

Sharon Hassin

Tel Aviv Sourasky Medical Center

Tel Aviv, Israel

Recruiting

Haleli Sharir · halelis@tlvmc.gov.il

Meirav Kalish · meiravk@tlvmc.gov.il

Penina Ponger, MD

Roy N Alcalay, MD

The original descriptions and participation rules come from the registry. Participation is voluntary and does not guarantee benefit.