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Parkinson’s Foundation Announces New Genetic Initiative Connecting Parkinson’s Genetic Data with Clinical Care

MIAMI & NEW YORK—March 6, 2018—The Parkinson’s Foundation today announced a new initiative offering genetic testing and counseling to Parkinson’s patients within its Center of Excellence network. The foundation is establishing a scientific and industry advisory board that will convene experts in genetics, clinical care, research, and ethics to implement this new initiative.

“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,” said John L. Lehr, CEO of the Parkinson’s Foundation. “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.”

Three key objectives of the Parkinson’s Foundation’s Genetic Initiative are:

  1. Accelerate clinical trials: Recognizing that most people with Parkinson’s do not know their genetic status or eligibility for advanced clinical trials, the Parkinson’s Foundation will offer genetic testing at select Centers of Excellence. This initial strategy will assist in the recruitment for clinical trials of individuals with specific gene variants in LRRK2 (leucine-rich repeat kinase 2)Mutations in this gene are the most common cause of inherited Parkinson’s. Researchers have identified more than 100 LRRK2 gene mutations that increase the risk of developing PD. It is particularly common in people of Ashkenazi Jewish, North African Arab Berber and Basque descent, and variants have also been found in Chinese and Japanese populations. This gene is also known as PARK8, denoting its link to Parkinson’s disease and the order in which it was found to have a connection to PD (8th). and GBA.
  2. Unlock the potential of genetics for improved Parkinson’s care and research: Enrollment in this initiative will create the largest, active Parkinson’s disease database linking genetic status to clinical status.
  3. Empower people living with Parkinson’s: Genetic data offer insights into disease progression and symptom severity that may potentially influence clinical care and treatment decisions. 

The foundation will establish a repository of genetic data through its Parkinson’s Outcomes Project, the largest, ongoing clinical study of Parkinson’s disease to date.  The study has collected patient information on more than 10,000 individuals with Parkinson’s. The addition of genetic information to the clinical outcomes data will increase scientific knowledge and understanding of the impact of genetics in Parkinson’s.

“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,” said James Beck, PhD, Chief Scientific Officer at the Parkinson’s Foundation. “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 Parkinson’s Foundation leads efforts to identify and disseminate new treatments and improved care through its Center of Excellence network. Each center is staffed by specialists in Parkinson’s disease treatment, delivering the highest standard of care currently available. The network includes 42 academic medical centers around the world, including 28 in the United States.

“Most people with Parkinson’s do not know their genetic status and therefore do not know if they will be eligible for the next generation of clinical trials,” said Jon Stoessl, MD, chair of the Parkinson’s Foundation Scientific Advisory Board. “With this initiative, a patient’s genetic status will be available to help inform clinical decision-making from the start, as well as track and analyze outcomes over time in a more comprehensive fashion.”

While experts estimate that 10 percent to 15 percent of all Parkinson’s cases are genetic forms of the disease, they also believe the disease is caused by a complex interaction of genetic and environmental factors. Parkinson’s Foundation-supported scientists are currently working to identify the underlying genetic mechanisms of the disease – a critical step to developing new therapies and treatments.

The foundation will convene members of its Scientific Advisory Board, patient advocates, industry and academic partners, and Center of Excellence directors in May 2018 at the annual Parkinson’s Foundation Center Leadership Conference in New Jersey. The first series of sites for implementation of the Genetic Initiative will be announced in the fall of 2018.

The idea for the Genetic Initiative sparked from discussions with Parkinson’s Foundation Scientific Advisory Board Member Roy Alcalay, MD, MS, an expert in the genetics of Parkinson’s disease and assistant professor of neurology at Columbia University, a Parkinson’s Foundation Center of Excellence.

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About the Parkinson’s Foundation 
The Parkinson’s Foundation makes life better for people with Parkinson’s disease by improving care and advancing research toward a cure. In everything we do, we build on the energy, experience and passion of our global Parkinson’s community. For more information, visit www.parkinson.org or call (800) 4PD-INFO (473-4636).

About Parkinson’s Disease 
Affecting nearly one million Americans and 10 million worldwide, Parkinson’s disease is the second-most common neurodegenerative disease after Alzheimer’s and is the 14th-leading cause of death in the United States. It is associated with a progressive loss of motor control (e.g., shaking or tremor at rest and lack of facial expression), as well as non-motor symptoms (e.g., depression and anxiety). There is no cure for Parkinson’s and 60,000 new cases are diagnosed each year in the United States alone.

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