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NCT Number: NCT04994015

Parkinson's Foundation PD GENEration Genetic Registry

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

Recruiting

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Key information

Age range

18 year and older

Sex eligibility

All sexes

Study type

Observational

Primary location

Toronto Western Hospital, Toronto, Ontario, Canada

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About this study

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.

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

Inclusion criteria

  • 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)

  • 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

  • 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

Treatment and study plan

Lab Assay for seven genetic variants for Parkinson's Disease

Device

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

Primary outcomes

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

    Time frame: 6 months

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

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

    Time frame: 6 months

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

Study contacts

Contact information is provided by the study sponsor or research team.

Kamalini Ghosh, MS

CONTACT

[email protected]

1-800-473-4636

Sponsors and collaborators

Lead sponsor

Parkinson's Foundation

Other

Collaborators

  • Fulgent Genetics
  • Indiana University
  • The Parkinson Study Group

Registry information

Important dates

Study start
2020
Primary completion
2026
Study completion
2026
First posted
Aug 6, 2021
Registry last updated
May 21, 2025

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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