Parkinson’s Foundation PD GENEration Genetic Registry (PDGENE-PF)

Objective

ClinicalTrials.gov ID: NCT04994015
Ages Eligible: 18 Years and Older
Sexes Eligible: All
Study Phase: Observational [Patient Registry]
Study Completion (Estimated): 2026-06-01

Principal Investigator: Pinky Agarwal, MD, FAAN

Contact Information:

EvergreenHealth Research Department
425-899-5385
EvergreenResearch@evergreenhealthcare.org

Summary:

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.

Eligibility Criteria:

Inclusion Criteria

• 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).

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.
5. Under the age of 18

Clinical Trial Categories

• Parkinson's Disease