MIAMI and NEW
YORK, March 6, 2018 /PRNewswire-USNewswire/ -- 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 at 20 centers. 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).
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.
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.
CONTACT: Leilani
Pearl, 305-537-9907, lpearl@parkinson.org
SOURCE
Parkinson's Foundation
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