PDGeneration: Mapping the Future of Parkinson's Disease
PDGeneration: Mapping the Future of Parkinson's Disease
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).
The purpose of this study is to evaluate how offering Clinical Laboratory Improvement
 Amendments (CLIA) certified genetic testing for Parkinson's Disease (PD) genes to people with
 Parkinson's Disease impacts clinical care and potential enrollment in clinical trials. This
 multi-center study will assess the impact and satisfaction of the mode of genetic counseling
 by comparing counseling conducted by a clinician versus centralized genetic counseling
 conducted through Indiana University. The study will also assess knowledge gained by
 administering a knowledge survey pre- and post-genetic testing. All genetic test results will
 be returned to participants through a genetic counseling visit.
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.