This study is in progress, not accepting new patients

PDGeneration: Mapping the Future of Parkinson's Disease

a study on Parkinson's Disease

Summary

Eligibility
for people ages 18 years and up (full criteria)
Location
at UCSD
Dates
study started
completion around

Description

Summary

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).

Official Title

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

Details

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.

Keywords

Parkinson's Disease and Parkinsonism, Parkinson's, Genetics, PD Genetics, Parkinson Disease, Parkinsonian Disorders, Lab Assay for seven genetic variants for Parkinson's Disease, Site-Based Genetic Counseling, Centralized Genetic Counseling

Eligibility

You can join if…

Open to people ages 18 years and up

  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.

You CAN'T join if...

  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.

Locations

  • University of California San Diego (UCSD)
    La Jolla California 92093 United States
  • Barrow Neurological Institute
    Phoenix Arizona 85013 United States

Details

Status
in progress, not accepting new patients
Start Date
Completion Date
(estimated)
Sponsor
Parkinson's Foundation
Links
For more information and to enroll, please visit the website.
ID
NCT04057794
Study Type
Interventional
Participants
About 1982 people participating
Last Updated