PDGeneration: Mapping the Future of Parkinson's Disease

ID#: NCT04057794

Age: 18 years - 66+

Gender: All

Healthy Subjects: No

Study Phase: N/A

Recruitment Status: Recruiting

Start Date: August 15, 2019

End Date: April 15, 2025

Contact Information:
Elizabeth U Lyda, BS
585-273-4038
Karen C Hodgeman
585-273-5365
Summary:

To assess the feasibility, impact, and participant satisfaction of offering Clinical Laboratory Improvement Amendments (CLIA) certified genetic testing as part of clinical care for People with Parkinson's disease (PWP).

Eligibility:



Inclusion Criteria:

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 Glucosylceramidase Beta (GBA), LRRK2 and 5 additional PD related genes (SNCA, VPS35, PRKN, PINK-1, PARK7).

3. Capacity to give full informed consent in writing, and have read and signed the informed consent forms (ICFs) based on clinician's determination.

4. Able to perform study activities (including completion of either online, in-person or paper surveys).

5. Individuals must speak and understand the language of the informed consent.

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.