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Parkinson's Foundation Launches Initiative to Connect PD Genetic Data With Clinical Care


March 19, 2018

The Parkinson’s Foundation recently announced a new initiative within its Center of Excellence network that will offer genetic testing and counseling to its Parkinson disease (PD) patients. A scientific and industry advisory board will be created to convene experts in genetics, clinical care, research, and ethics to advance this initiative.

John L. Lehr, CEO of the Parkinson's Foundation, said in the foundation’s press release, “For people with Parkinson’s, genetic tests are either not available, not affordable, and not covered by health insurance or offered in tandem with genetic counseling. We look to solve that by offering genetic testing, coupled with counseling in a clinical setting where doctors and patients can work together to best manage the disease” (March 6, 2018).

The foundation will create a repository of genetic data collected from over 10,000 individuals with PD across 20 centers from its Parkinson’s Outcomes Project, the largest ongoing clinical study of PD to date.

James Beck, PhD, Chief Scientific Officer at the Parkinson’s Foundation, commented, “What makes this initiative unique is its novel approach of offering genetic testing for relevant Parkinson’s-related genes in an easily accessible, clinical environment through our network….We expect that this will accelerate enrollment in clinical trials for the next generation of treatments and help facilitate the use of genetic information to improve care and expand research.”

The foundation outlined their 3 core objectives for the initiative:

  • Accelerate clinical trials
  • Discover the potential of genetics in PD care and research
  • Empower individuals living with PD

Parkinson’s Foundation Scientific Advisory Board Member Roy Alcalay, MD, MS, an expert in the genetics of PD and assistant professor of neurology at Columbia University, a Parkinson's Foundation Center of Excellence, was a key contributor to the conceptualization of the initiative.

—Amanda Del Signore


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