Parkinson's Foundation PD GENEration Genetic Registry

a study on Parkinson's Disease

Summary

Eligibility
for people ages 18 years and up (full criteria)
Location
at UCSD UCSF
Dates
study started
completion around
Principal Investigator
by Irene Litvan, MD (ucsd)Jill Ostrem, MD (ucsf)
Headshot of Irene Litvan
Irene Litvan
Headshot of Jill Ostrem
Jill Ostrem

Description

Summary

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

Details

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.

Keywords

Parkinson's Disease, Genetics, Genetic Counseling, Whole Genome Sequencing, Parkinson Disease, Lab Assay for seven genetic variants for Parkinson's Disease

Eligibility

You can join if…

Open to people ages 18 years and up

  • 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.

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.
  5. Under the age of 18

Locations

  • University of California San Diego (UCSD) accepting new patients
    La Jolla California 92093 United States
  • University of California San Francisco (UCSF) accepting new patients
    San Francisco California 94143 United States

Lead Scientists at University of California Health

  • Irene Litvan, MD (ucsd)
    Dr. Irene Litvan is the Tasch Endowed Professor of Neurology and Director of the Parkinson and Other Movement Disorder Center at the University of California, San Diego (UCSD).
  • Jill Ostrem, MD (ucsf)
    Professor, Neurology, School of Medicine. Authored (or co-authored) 188 research publications

Details

Status
accepting new patients
Start Date
Completion Date
(estimated)
Sponsor
Parkinson's Foundation
ID
NCT04994015
Study Type
Observational [Patient Registry]
Participants
Expecting 25000 study participants
Last Updated