Parkinson's Foundation PD GENEration Genetic Registry

  • End date
    Jun 1, 2025
  • participants needed
  • sponsor
    Parkinson's Foundation
Updated on 14 July 2022
movement disorder


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


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.

Condition Parkinson's Disease
Treatment Lab Assay for seven genetic variants for Parkinson's Disease
Clinical Study IdentifierNCT04994015
SponsorParkinson's Foundation
Last Modified on14 July 2022


Yes No Not Sure

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
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How to participate?

Step 1 Connect with a study center
What happens next?
  • You can expect the study team to contact you via email or phone in the next few days.
  • Sign up as volunteer to help accelerate the development of new treatments and to get notified about similar trials.

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Additional screening procedures may be conducted by the study team before you can be confirmed eligible to participate.

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If you are confirmed eligible after full screening, you will be required to understand and sign the informed consent if you decide to enroll in the study. Once enrolled you may be asked to make scheduled visits over a period of time.

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Complete your scheduled study participation activities and then you are done. You may receive summary of study results if provided by the sponsor.

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