Parkinson's Foundation PD GENEration Genetic Registry

What this study is about

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

Who can join (things the study team will check)

✅ You may be able to join if…

• Study Population 1: PWP (open for recruitment) Study Population 2: People at risk of developing PD (not 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).
• 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 may not be able to join if…

• 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

Where this trial is running

• University of Alabama Birmingham, Birmingham, Alabama, United States
• MD First Research, Chandler, Arizona, United States
• Barrow Neurological Institute, Phoenix, Arizona, United States
• University of Arkansas, Fayetteville, Arkansas, United States
• University of California San Diego (UCSD), La Jolla, California, United States
• University of California Los Angeles, Los Angeles, California, United States
• University of California San Francisco (UCSF), San Francisco, California, United States
• University of Colorado Anschutz, Aurora, Colorado, United States
• Hartford Healthcare, Hartford, Connecticut, United States
• Aventura Neurology - Visionary Investigators Network, Aventura, Florida, United States
• Parkinson's Disease & Movement Disorder Center of Boca Raton, Boca Raton, Florida, United States
• University of Florida, Gainesville, Florida, United States

+ 44 more sites.

Who to contact

Kamalini Ghosh, MS · 1-800-473-4636 · kghosh@parkinson.org

It's completely normal to call and ask questions before deciding anything. Mention the study ID: NCT04994015.