CHARLESTON (WVDN) – A new West Virginia Parkinson’s disease (PD) registry has taken a big step forward with the announcement of a planning grant from The Michael J. Fox Foundation for Parkinson’s Research (MJFF), the world’s largest nonprofit funder of Parkinson’s disease research. The announcement was made today during a meeting with legislators, policymakers, patients, and care partners at the State Capitol.
Recognizing West Virginia’s strong partnerships and potential as a national leader, MJFF has provided a grant of $160,000 to the West Virginia University’s Rockefeller Neuroscience Institute (WVU RNI) to host key stakeholder discussions to shape a potential framework for the statewide Parkinson’s registry. The framework could be used as a “best practices” plan for other states to follow.
According to MJFF, five states have established varying Parkinson’s disease registry concepts that range from partial registries to attempts at building a broader neurodegenerative registry.
“Our grant is aimed at helping WVU and its partners engage all the right stakeholders to design a state-of-the-art registry,” said Ted Thompson, JD, senior vice president of public policy for The Michael J. Fox Foundation.
“The West Virginia registry, when it’s up and running, will provide population-based data that will be critically important to moving the science forward and getting us closer to better treatments and a cure,” he said.
The West Virginia Legislature passed legislation in 2022 to establish the West Virginia Parkinson’s Registry. The state Parkinson’s registry will be managed by the WVU RNI.
“The new registry will help West Virginia to be a leader in advancing our understanding of Parkinson’s disease, its causes, and treatment,” said Ali Rezai, M.D., executive chair of the WVU RNI. “Our state is fortunate to have a broad, inclusive, and collaborative network of partners working together toward a common goal, and WVU RNI is proud to help lead the effort.”
The West Virginia registry will be one of the first patient registries managed by an academic medical center and the first in the Appalachian region. An advisory committee will work with WVU RNI to establish the registry. The board will include representatives from the state’s two other medical systems: Marshall Health and Charleston Area Medical Center.
“It is an honor to serve on West Virginia’s new Parkinson’s disease registry advisory board,” said Heather Pinckard-Dover, M.D., Marshall Health neurosurgeon and assistant professor at the Marshall University Joan C. Edwards School of Medicine. “This is a big step toward understanding how Parkinson’s disease is impacting our community. These collaborations will help spur research that improves quality of life and that will, hopefully, one day cure Parkinson’s disease.”
“I am excited to be part of this collaboration to better understand Parkinson’s disease in West Virginians and how that might translate into new discoveries,” said Lauren Seeberger, MD, movement disorders specialist at Charleston Area Medical Center. “Growing personalized research is a priority for CAMC as a basis for deeper insight into disease and innovation in treatment.”
The registry advisory committee will also consist of patients, policymakers, researchers, and other individuals who will bring valuable insights to a registry design.
The Michael J. Fox Foundation along with other Parkinson’s organizations and industry partners commissioned The Economic Burden of Parkinson’s disease study in 2019 to estimate the cost of Parkinson’s in the United States. It found the economic burden of Parkinson’s disease to be more than $52 billion annually in direct and indirect costs such as hospitalizations, medication, missed work and family (unpaid) care-giver time. According to the study, West Virginia has the third highest prevalence rate of Parkinson’s disease in the country with more than 7,000 people affected and costs $344 million annually to care for people living with PD.
“The West Virginia Parkinson’s community worked hard to pass the registry legislation a year ago and this grant will allow us to take the registry from concept to reality,” said George Manahan, founder and director of the Charleston Parkinson’s Support Group.
Manahan says his organization has partnered with The Michael J. Fox Foundation for the past ten years, raising funds through its annual Fox Trot fundraiser and helping to push for legislative solutions on both the state and federal levels.