People in South Florida with Parkinson’s Disease can get genetic testing and counseling at no cost through a study done in partnership between the University of Miami's Miller School of Medicine and the Parkinson’s Foundation.
The study, PD GENEration: Mapping the Future of Parkinson’s Disease, includes a screening appointment done by phone or video, lasting 15 to 30 minutes, to confirm one's eligibility. And then a a cheek swab collection using an at-home kit that could take up to two hours. Genetic counseling is also done by phone, including a review of the test results with a genetic counselor.
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"Genetics are something that everyone has involved in Parkinson's disease is a disease that affects everyone, all ethnicities, but when it comes to understanding the genetics of Parkinson's disease, too often we've relied on Caucasian and some Asian populations," said Dr. James Beck, the chief scientific officer at the Parkinson's Foundation. "Very little is known about the genetics that may modify the risk of Parkinson's disease in the Latino population. The goal, the hope is that we have precision medical treatments for Parkinson's disease, that is medicines targeted to one specific genetic background."
Colombians, Beck said, have a higher incidence of a certain mutation in a gene relevant to their Parkinson's disease than Caucasians, for instance. And genetics may explain why someone developed Parkinson's.
"But if you want to find out whether you have a genetic form of Parkinson's, it's difficult," Beck added. "It's not standard of care, so that means insurance [is] often not covered. It's expensive and it requires multiple testing labs in order to get an answer. PD GENEration is provided at no cost to people with Parkinson's."
The testing sites are located at UHealth’s Fort Lauderdale and Plantation locations and are open to people with Parkinson's across the state. To learn more, call 1-800-4PD-INFO (473-4636) or for enrollment questions, email Genetics@Parkinson.org.
