Call Our HELPLINE: 1-800-4PD-INFO (473-4636)

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 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.

###

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.

Tuesday, March 6, 2018
FDA Approves Drug to Treat Parkinson’s Disease Psychosis
Friday, April 29, 2016

Today, the FDA approved Nuplazid (pimavanserin) as the first drug to treat hallucinations and delusions associated with Parkinson’s disease psychosis, which affects up to 40% of people with Parkinson’s.

FDA Panel Backs Approval of Pimavanserin
Tuesday, March 29, 2016

Big News for Advanced Parkinson’s

Lea Dempsey, Seventh Grader from NJ, Designs Winning Parkinson’s Awareness T-Shirt
Thursday, March 24, 2016

A digital drawing by 13-year-old Lea Dempsey of Princeton, NJ, came out on top in the Parkinson’s Disease Foundation’s (PDF) Seventh Annual Parkinson’s Awareness T-Shirt Design Contest. In PDF’s “kids only” contest, Ms. Dempsey’s design was a contender along with 20 other submissions from children ages five to 15-years-old. Her design was chosen as the winner by the general public in an online vote.

National Parkinson Foundation Campaign Promotes the Power of Exercise During Parkinson’s Disease Awareness Month
Monday, March 21, 2016

The National Parkinson Foundation (NPF) launched the #Move4PD campaign in recognition of National Parkinson’s Disease Awareness Month today. The campaign’s goal is to highlight the importance of exercise for those with Parkinson’s disease (PD) and its positive effects on the brain.

Parkinson's Disease Foundation to Host Celebrate Spring New York on Thursday, April 7
Friday, March 18, 2016

The Young New Yorkers for the Fight Against Parkinson’s and the Parkinson’s Disease Foundation® (PDF®) will hold its ninth annual Celebrate Spring New York at Marquee located at 289 10th Avenue between 26th and 27th Streets in New York City on Thursday, April 7, 2016.   Proceeds from the evening will support PDF’s research programs.

PDF Champions Raise More Than $35,000 for Parkinson’s Research at Martinis & Bellinis Event
Monday, March 7, 2016

Norwood, NJ, resident Stephanie Goldman-Pittel and her fellow co-chairs from nearby communities raised more than $35,000 to benefit the Parkinson’s Disease Foundation (PDF) at Martinis & Bellinis, their third annual PDF Helping Hours event on March 3. More than 100 guests attended the event held at Harvest Bistro & Bar in Closter, NJ, to support Parkinson’s research.

Parkinson's Disease Foundation Launches Online Course for Occupational Therapy Practitioners
Tuesday, March 1, 2016

The Parkinson's Disease Foundation® (PDF®) is pleased to launch a new online course, Occupational Therapy: Across the Parkinson's Disease Continuum, to prepare occupational therapy practitioners who are caring for the growing population of people living with Parkinson's disease.

Parkinson's Disease Foundation Invests in Next Generation of Nursing Leaders
Wednesday, February 24, 2016

The Parkinson's Disease Foundation® (PDF®) is pleased to announce eight new training opportunities for nursing faculty as part of The Edmond J. Safra Visiting Nurse Faculty Program at PDF. The program improves nursing care in Parkinson's disease (PD) by training nurse faculty leaders who in turn, prepare their students to fight the disease on the front lines.

PDF Champions to Host Martinis & Bellinis for Parkinson’s Research at Harvest Bistro & Bar in Closter, NJ, on Thursday, March 3
Tuesday, January 26, 2016

WHAT:  Norwood, NJ, resident Stephanie Goldman-Pittel is inviting her community to Harvest Bistro & Bar in Closter, NJ, for post-work cocktails to support the Parkinson’s cause. She and her fellow co-chairs from nearby communities are hosting Martinis & Bellinis, their third annual Helping Hours event to benefit the Parkinson’s Disease Foundation (PDF) on Thursday, March 3 from 7:00 PM to 10:00 PM.

PDF Mourns the Passing of Joel Gerstel
Tuesday, January 26, 2016

The Parkinson’s Disease Foundation (PDF) mourns the loss of Joel Gerstel, a long-time friend and partner in the Parkinson’s community. Mr. Gerstel, who served as President and CEO of the American Parkinson Disease Association (APDA) until 2012, passed away on January 21 at the age of 80.

Pages

mail icon

Subscribe to get the latest news on treatments, research and other updates.