Parkinson's Foundation PD GENEration Genetic Registry
Key facts
- Where
- Edmonton, Montreal, Toronto, and Vancouver, CanadaSee the 4 sites
Where in Canada
- University of AlbertaEdmonton, CanadaTaking people
- McGill UniversityMontreal, CanadaNo longer taking part
- Toronto Western HospitalToronto, CanadaTaking people
- University of British ColumbiaVancouver, CanadaTaking people
Questions to ask the study team
- How often do I need to come in, and for how long each time?
- Are travel costs paid?
- Can I keep my own doctor?
- What happens if I want to stop?
Trial details
- Who runs it
- Parkinson's Foundation
- Trial code
- NCT04994015
- Record updated
- 8 September 2026
- Original description
Development of a central repository for PD-related genomic data for future research.Read full original descriptionShow less
Development of a central repository for PD-related genomic data for future research.
Inclusion: 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: Individuals who have received a blood transfusion within the past 3 months; Individuals who have had a bone marrow transplant within the past 5 years; 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 active hematologic malignancies such as lymphoma or leukemia; Under the age of 18.