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Current stage not confirmed · registry status

PDGeneration: Mapping the Future of Parkinson's Disease

A plain-language introduction is being prepared for this study. Open it to read the original description, who can join and how to contact the team.

Testing a treatment or activity · Study reference: NCT04057794

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This registry record was last updated over six months ago, or its update date is missing. Recruitment may have changed. Confirm with the team before making plans.

Open the official registry record ↗

Follow this study

Stage needs confirmation

Start (reported actual date)
2019-08-15
Main measurements finished (reported actual date)
2021-12-01
Study finished (planned)
2025-04-15

Planned dates can move. A study finishing does not tell us when a paper will be published.

No results summary has been confirmed in the registry records we imported. See connected papers below; we keep checking after recruitment ends.

Changes we have recorded
  • 2026-10-11 — unknown

These are dates we observed a change, not necessarily the dates it happened.

Papers connected to this study

PD GENEration: An International Parkinson's Disease Genetic Research Study.
This paper mentions the study ID; the relationship needs review · 2026

Improving Prediction of Falls and Cognitive Impairment in Parkinson Disease: Protocol for a Decentralized Observational Study
This paper mentions the study ID; the relationship needs review · 2025

Improving Prediction of Falls and Cognitive Impairment in Parkinson Disease: Protocol for a Decentralized Observational Study (Preprint)
This paper mentions the study ID; the relationship needs review · 2025

Participation rules recorded for this study

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: 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 Glucosylceramidase Beta (GBA), LRRK2 and 5 additional PD related genes (SNCA, VPS35, PRKN, PINK-1, PARK7). 3. Capacity to give full informed consent in writing, and have read and signed the informed consent forms (ICFs) based on clinician's determination. 4. Able to perform study activities (including completion of either online, in-person or paper surveys). 5. Individuals must speak and understand the language of the informed consent. 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.
Full study name & original research details

Official study title

Parkinson's Foundation: PD Generation: Mapping the Future of Parkinson's Disease

Short title used by the registry

PDGeneration: Mapping the Future of Parkinson's Disease

Original description

To assess the feasibility, impact, and participant satisfaction of offering Clinical Laboratory Improvement Amendments (CLIA) certified genetic testing as part of clinical care for People with Parkinson's disease (PWP).

Further description from the registry

The purpose of this study is to evaluate how offering Clinical Laboratory Improvement Amendments (CLIA) certified genetic testing for Parkinson's Disease (PD) genes to people with Parkinson's Disease impacts clinical care and potential enrollment in clinical trials. This multi-center study will assess the impact and satisfaction of the mode of genetic counseling by comparing counseling conducted by a clinician versus centralized genetic counseling conducted through Indiana University. The study will also assess knowledge gained by administering a knowledge survey pre- and post-genetic testing. All genetic test results will be returned to participants through a genetic counseling visit.

Conditions reported: Parkinson's Disease and Parkinsonism

Registry records for this study

Records are joined using registration identifiers. Titles alone do not establish that two studies are the same.

Study type
Interventional
Interventions
Lab Assay for seven genetic variants for Parkinson's Disease; Lab Assay for seven genetic variants for Parkinson's Disease
Phases
NA
Sponsor
Parkinson's Foundation
Start date reported by registry
2019-08-15 (actual)

Registry updated: 2023-07-14 · Status last verified by the registry submitter: 2023-07

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.

No central contact is listed. Check the location contacts or the official registry record.

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.

Barrow Neurological Institute

Phoenix, Arizona, United States

Status not reported

University of California San Diego (UCSD)

La Jolla, California, United States

Status not reported

University of Miami

Fort Lauderdale, Florida, United States

Status not reported

Cleveland Clinic Florida-Weston

Weston, Florida, United States

Status not reported

Northwestern University Feinberg School of Medicine

Chicago, Illinois, United States

Status not reported

University of Kansas Medical Center

Kansas City, Kansas, United States

Status not reported

Massachusetts General Hospital

Boston, Massachusetts, United States

Status not reported

Health Partners/Park Nicollet: Struthers Parkinson's Center

Minneapolis, Minnesota, United States

Status not reported

Beth Israel Medical Center

New York, New York, United States

Status not reported

Columbia University

New York, New York, United States

Status not reported

Cleveland Clinic

Cleveland, Ohio, United States

Status not reported

University of Pennsylvania

Philadelphia, Pennsylvania, United States

Status not reported

Baylor College of Medicine

Houston, Texas, United States

Status not reported

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