Parkinson’s Foundation Free Genetic Testing and Counseling Study

On May 30, 2019, I attended the Parkinson’s Foundation New Frontiers in Research and Care community educational event. Meeting in Palm Beach Gardens four miles from my home made it a “must see” event.

Dr. Anna Naito serves as a Director of Research Programs at the Parkinson’s Foundation national headquarters in Miami, FL. She has been involved in PD research for over ten years. While earning her PhD in neuropharmacology from the University of Southern California, she researched dopamine pathways in the brain.

What is PDGENEeration?

Dr. Naito is now responsible for leading the Foundation’s flagship program to offer free genetic testing and counseling through the PDGENEeration five-year study. It will provide genetic information that will lead to improving care, expanding research and accelerating enrollment in clinical trials. The objective of PDGENEeration is to offer free genetic testing and counseling to all people with Parkinson’s. In the spring of 2019, six pilot studies started in the Northeast, Midwest and West coast with 600 people. The $1500 free test for seven mutations is scripted by a movement disorder doctor. Genetic counselors are available. During the expansion phase, the goal is 15,000 total participants in five years across approximately fifty Center of Excellence and Parkinson’s Study Group sites.

Genetic Study Steps

    1. Schedule appointment if eligible
    2. Have blood drawn as well as clinical and cognition evaluation
    3. Test blood which will take six weeks
    4. Follow-up report with doctor
    5. Complete survey on your satisfaction level and how it changed your care

A sign-up list was provided for those of us in South Florida who were interested in being notified about future free testing in 2020. (Yes, I signed up!)

What About At Home Genetic Tests?

Audience questions related to 23andMe home test. Dr. Naito emphasized you should definitely share results with your doctor. However, it only tests for two mutations—LRRK2 and GBA and does not offer a clinician and genetic counseling. The comprehensive PDGENEeration study tests for LRRK2 and GBA plus five other common PD mutations and provides clinical and cognition evaluation by a movement disorder specialist and counseling by a genetic counselor.

Contacting PD Foundation

To learn more about the PDGENEeration, visit here.  Or call 1-800-4PD-INFO.

The Foundation is recruiting 600 participants to enroll in the 2019 study. For more information regarding their need and your eligibility, please email Genetics@Parkinson.org.

Blessings!
Linda

 

 

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