Parkinson’s association to offer genetic tests, data access

The Parkinson’s Foundation will launch a nationwide program offering free genetic testing for the disease and counseling to help patients understand their results.

Test results from the program, called PD GENEration, will be used in research to aid in developing better treatments and personalized medicine for those found to have the disease.

“The importance of this study is that it provides people with Parkinson’s easy access to their genetic data through their clinicians,” says Roy Alcalay, MD, principal investigator for PD GENEration. It will enable people with Parkinson’s and their providers to integrate this information into clinical decision making regarding future participation in clinical trials.”

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There is no cure for Parkinson’s, which over time results in a loss of motor control; about 60,000 cases of the disease are diagnosed annually in the United States.

The free testing is important, because genetic tests for Parkinson’s are not widely available or affordable, and costs of the tests often are not covered by insurance. Consequently, most people with the disease and their physicians do not know if the patient carries genetic mutations or other relevant Parkinson’s-related genes.

A pilot program will start at Columbia University Irving Medical Center with a goal of 600 participants by late summer. “As a person living with Parkinson’s disease, I’m excited to participate in PD GENEration so I can help change the course of how we manage the disease,” says Anne Hall, an attorney, research advocate and retired executive with the Department of Health and Human Services.

Following the pilot, the program will expand to 50 sites across the nation offering testing and counseling for as many as 15,000 persons. Fulgent Genetics, specializing in genetics testing at scale, will process, analyze and store samples, while the University of Florida CTSI Data Coordinating Center will keep all contributed data secured and confidential.

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