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Updates from Washington

Progress on the National Neurological Conditions Surveillance System

Ted Thompson, Todd Sherer and Admiral Bill Mac Kenzie.

Last month, Todd Sherer, PhD, CEO of The Michael J. Fox Foundation (MJFF) and Ted Thompson, JD, senior vice president of public policy at MJFF, traveled to Atlanta to meet with Dr. Anne Schuchat, Principal Deputy Director of the Centers for Disease Control and Prevention (CDC), and Admiral Bill Mac Kenzie, MD, Deputy Director for Science, Center for Surveillance, Epidemiology, and Laboratory Services to discuss the progress being made on the National Neurological Conditions Surveillance System (NNCSS).

In 2016, the NNCSS was enacted and signed into law; and, in 2018 the CDC began work to establish the NNCSS, embarking first on a two-year pilot with Parkinson’s disease and multiple sclerosis with the ultimate goal of expanding the system to all neurological diseases and conditions.

“The data collected by the NNCSS could significantly benefit both researchers and patients,” said MJFF CEO Todd Sherer. “Having nationwide data on people with Parkinson’s will provide researchers with a new understanding of the demographics of this disease and whether some clusters are associates with exposure to pesticides and herbicides. This knowledge could lead to better treatment and care options for people living with Parkinson’s and pave the way for prevention strategies.”

The CDC has begun identifying and pulling data from various sources, including Medicare, to begin the initial data-collection effort. This is the first step in what will scale into a much larger effort that could eventually expand to include additional neurological diseases and conditions. Beginning with Parkinson’s and multiple sclerosis, the CDC’s goal is to build this initiative in the most cost-effective way, allowing them to take advantage of electronic health records to compile population-based data on neurological diseases.

Click here to learn more about the NNCSS and MJFF’s role in its creation.

At the meeting, Sherer provided an overview of MJFF’s work to measure, define and treat Parkinson’s, highlighting the Parkinson’s Progression Markers Initiative and various tools we have created to further research. He also discussed a new initiative to analyze genetics of more than 30,000 underrepresented people in Asia and Africa.

Following the meeting, Thompson noted: “Partnerships and engagement with the federal government is critical, and working with the CDC on this important initiative, along with MJFF’s partnership with the National Institute of Neurological Disorders and Stroke and industry partners on the Accelerating Medicines Partnership for Parkinson’s disease, leverages knowledge and resources to advance Parkinson’s research.”

What’s next for the NNCSS initiative? As the data collection and analysis efforts move forward, Thompson and MJFF’s staff will participate in a listening session in early November; there, the CDC will meet with representatives from other neurological disease advocacy groups to learn about their needs for such a surveillance system and update the community on the status of the pilot project. This listening session will help guide the CDC’s planning and future scaling efforts as this program continues.

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