Each April, during Parkinson’s Awareness Month, I take a moment to reflect on the progress that we have made in understanding and treating Parkinson’s disease .
Parkinson’s disease ranks as the second most common neurodegenerative disorder after Alzheimer’s disease, affecting the lives of between 500,000 and 1 million people in the United States (U.S.). It continues to be a rising cause of illness and death in the U.S., and addressing this burden remains a high priority at NINDS. This month serves as a vital reminder of our commitment to the millions of people affected by Parkinson’s disease.
Recently, the National Institutes of Health (NIH) delegated NINDS the authority to carry out the Dr. Emmanuel Bilirakis and Honorable Jennifer Wexton National Plan to End Parkinson’s Act. Signed into law in July 2024, the Act was sponsored by West Virginia Senator Shelley Moore Capito and Florida Congressman Gus Bilirakis in honor of his brother, Emmanuel, who died from Parkinson’s, and his colleague, former Virginia Congresswoman Jennifer Wexton, who is living with progressive supranuclear palsy, a neurodegenerative parkinsonism. The plan calls for a comprehensive and nationwide approach to prevent, diagnose, treat, and ultimately cure Parkinson’s disease and other neurodegenerative parkinsonisms, such as multiple system atrophy, corticobasal degeneration, progressive supranuclear palsy, and Parkinson’s-related dementia.
Innovation seldom occurs in isolation. Developing this national plan involves gathering input from the Advisory Council on Parkinson’s Research, Care, and Services. The council will include people living with Parkinson’s disease, caregivers, healthcare providers, researchers, advocacy organizations, and representatives from federal agencies. Earlier this year, we called for nominations for the Advisory Council and are currently reviewing the nominees to assemble a slate of federal and non-federal members. NIH will submit the slate to the HHS Secretary for final approval. We are grateful to all who submitted nominations and look forward to working with this diverse group of partners.
Last year, my message for Parkinson’s Awareness Month centered on exploring the biology of Parkinson’s disease and the molecular causes of its symptoms. This year, I want to highlight some promising work underway at NINDS and across our research community.
The Accelerating Medicine Partnership in Parkinson's Disease (AMP PD) program is a public-private partnership between the NIH, non-profit organizations, and multiple biopharmaceutical and life sciences companies managed through the Foundation for the NIH.
In a series of workshops in 2024, NINDS explored with the Parkinson’s disease research community the barriers to therapeutics development for Parkinson’s disease and AMP PD fills a number of the recommended focus areas. Through AMP PD, researchers are working to discover and validate new therapeutic targets and especially biomarkers to diagnose Parkinson’s disease earlier, track how it progresses, and evaluate the effects of potential new treatments. This will be done through molecular characterization and longitudinal clinical profiling of Parkinson’s disease patient data and biosamples, including clinical data from about 3,600 people with Parkinson’s disease and 71 with multiple system atrophy, whole genome sequencing data from more than 10,000 individuals, proteomic data from cerebrospinal fluid, plasma samples from over 1,400 people, and blood transcriptomic data from more than 3,500 individuals. We deeply appreciate the participation of so many people suffering with Parkinson’s disease in the various research projects that contribute to this large data/sample set.
This open dataset aims to foster collaboration between scientists, advocates, and industry partners to identify new treatment strategies. Sharing this kind of data is central to our mission. Collaboration accelerates discovery and, ultimately, brings hope faster to the people who need it.
I am also pleased to share news of the recent FDA approval of Adaptive Deep Brain Stimulation for Parkinson’s Disease (aDBS). Unlike traditional DBS, which delivers a constant level of electrical stimulation to specific areas in the brain that control movement, aDBS adjusts the stimulation in real-time based on a person's unique brain activity. This personalized approach can provide more effective relief for people who haven’t responded well to standard DBS.
The approval is based on findings from the Adaptive DBS Algorithm for Personalized Therapy in Parkinson's Disease trial. In 2015, NIH-funded researchers identified the brain signals that could guide adaptive stimulation, laying the groundwork for this breakthrough and this success story shows the power of long-term investment in basic and translational research.
In fiscal year 2023, NINDS invested about $126 million in Parkinson’s disease research, spanning basic, translational, and clinical science. This investment supports a broad portfolio of investigator-initiated projects and dedicated programs, including the Morris K. Udall Centers of Excellence for Parkinson’s Disease Research and the Parkinson’s Disease Biomarkers Program.
We also support vital research resources such as the BioSEND biospecimen repository, the Data Management Resource for clinical data, the NIH NeuroBiobank and the NINDS Human Cell and Data Repository.
These resources ensure that researchers have the tools to make the next generation of discoveries in Parkinson’s disease research.
As we focus on Parkinson’s disease this month, I would like to thank the dedicated people who have made it their life’s work to better understand and treat Parkinson’s disease and to provide accurate information and support to individuals and their families affected by this disease. We are making a difference and, moving forward together, our efforts will continue to reduce suffering and improve the quality of the lives of people with Parkinson’s disease.