Progress and Updates from the PD GENEration Initiative: James Beck, PhD

WATCH TIME: 2 minutes

“As we work to ‘prepare the ground,’ so to speak, for helping people learn whether they have a genetic form of Parkinson's disease or not, our partners in pharma are busily preparing trials to come forth where they will need to ask these individuals who know they have a genetic form of Parkinson's disease to step forward and to participate in clinical trials. That is really going to be the way with which we're able to change the course of this terrible disease.”

The PD GENEration: Mapping the Future of Parkinson’s Disease initiative is helping to leverage genetic testing as a tool to uncover biological pathways that cause Parkinson disease (PD), being offered to patients with PD at no cost. As it stands currently, genetic tests for PD are expensive and not covered by insurance, according to the Parkinson’s Foundation, and most tests do not have genetic counseling to aid in interpreting and understanding results. The Parkinson’s Foundation is combatting this issue via PD GENEration, assisting patients and clinicians in identifying whether they have these changes in genes related to PD. Patients can participate via in-person testing at sites across the US and can also request an at-home test, which can be scheduled online.

James Beck, PhD, senior vice president and chief scientific officer, Parkinson’s Foundation, spoke with NeurologyLive^® on the current state of the program, with over 3300 individuals having been tested thus far. According to Beck, this is approximately 20% of the Foundation’s overall goal of testing 15,000 patients, and those involved continue to expand testing to a larger group of clinicians. With these results, Beck and the Foundation are hopeful that scientific research can be accelerated to improve understanding of the disease and identify additional treatment routes.

For more information about the study or enrollment, click here.