Genetic registry collecting genetic test results from people with Parkinson's disease
Builds a central database of genetic information from adults with Parkinson's disease.
Plain-language title generated from the registry record
Registry title: Parkinson's Foundation PD GENEration Genetic Registry
Key facts
- Where
- Edmonton, Montreal, Toronto, and Vancouver, CanadaSee the 4 sites
AI summary: who the study is looking for
From the trial's eligibility criteria. Machine-read from the registry text on this page, so it can be wrong. The registry text below and the trial team decide who can take part.
The trial is looking for adults with Parkinson's disease who agree to genetic testing for seven Parkinson's-related genes and to hear the results.
- Age
- 18 years or older
- Sex
- All sexes can join
- Disease stage
- Probable Parkinson's disease, based on the Movement Disorder Society (MDS) Clinical Diagnostic Criteria
- Earlier treatment
- No blood transfusion in the past 3 months; no bone marrow transplant in the past 5 years
- Biomarker or test result
- Willing to be tested for GBA, LRRK2, SNCA, VPS35, PRKN, PINK-1 and PARK7, and to be told the results
Main reasons for not taking part
- Atypical parkinsonian disorder, such as multiple system atrophy, progressive supranuclear palsy, dementia with Lewy bodies or corticobasal syndrome
- Blood transfusion in the past 3 months
- Active blood cancer such as lymphoma or leukemia
- Bone marrow transplant in the past 5 years
- Under 18 years old
Read by machine on 12 November 2026.
Where in Canada
- University of AlbertaEdmonton, CanadaContact: Frances CheungTaking people
- McGill UniversityMontreal, CanadaContact: Kamalini Ghosh, MSNo longer taking part
- Toronto Western HospitalToronto, CanadaContact: Nazish AhmedTaking people
- University of British ColumbiaVancouver, CanadaContact: Sahib DhaliwalTaking 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?
Contact the study team: see the registry record → Contacts and Locations
Print a page for my doctorTrial 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
Parkinson's Foundation PD GENEration Genetic Registry
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.