September 21, 2022

Today, U.S. Senators Chris Van Hollen, Democrat, MD, Chris Murphy, Democrat, Connecticut, and Bill Cassidy, MD, Republican, La. The Conditions Surveillance System (NNCSS) program collects privacy-preserving data about neurological conditions to help inform research and promote better treatment and healing.

Specifically, the act reauthorizes the NNCSS for an additional five years, increasing funding to $10 million from FY23, and plans to increase it to $20 million by FY26. The reapproval will allow the program to complete its current work on multiple sclerosis and Parkinson’s disease and expand to other neurological conditions.

“For Americans with neurological disorders such as Parkinson’s disease and multiple sclerosis, good data is key to advancing innovative treatments. It is important to fully fund the program for another five years, as this legislation will help the millions of patients and their families affected by these conditions each year, and we We aim to strengthen the response and treatment of Senator Van Hollen said.

“NNCSS is an important program that helps us better understand neurological disorders such as multiple sclerosis and Parkinson’s disease that affect more than one million Americans and their families. is the key to developing effective treatments and ultimately finding cures for these terrible diseases. We must continue to support their life-saving work.” said Senator Murphy.

“Hope for cure comes from advances in knowledge. Let’s create that hope.” Senator Cassidy said“This bill supports research into treatments and cures while protecting patient privacy.”

“Cure and prevent Parkinson’s disease means providing researchers with the most definitive information about how the disease develops and what triggers may exist here in the United States. The National Neurological Conditions Surveillance System is a world-class engine essential to the treatment of Parkinson’s disease and other neurological disorders.” said Ted Thompson, JD, senior vice president of the Michael J. Fox Foundation for Parkinson’s Research.“On behalf of the Parkinson’s community, we call on Congress to re-authorize the NNCSS so that the world’s best and brightest people can work together to treat and one day prevent Parkinson’s disease. Gives you access to the data and information you need Parkinson’s disease costs the United States more than $52 billion each year and will reach at least $80 billion over the next 15 years $10 million by 2023 to NNCSS Investing in , ultimately allowing us to offset billions of dollars in health care costs, is a smart investment and we hope Congress will support it.”

“Brain health is extremely important to an individual’s health. An important way for policymakers to improve brain health is to collect more data on the incidence and prevalence of neurological diseases.” is.” Orly Avitzur, MD, MBA, FAAN, President, American Academy of Neurology“The National Neurological Conditions Surveillance System is beginning to provide important insights into Parkinson’s disease and multiple sclerosis. Will have the resources to scale up.Neurologic diseases cost the United States more than $600 billion each year, and to provide researchers with critical data to help improve brain health, NNCSS We need investments like

“With a new study identifying the $85.4 billion annual economic burden of multiple sclerosis (MS), it is important to provide researchers with accurate and up-to-date data that will lead to answers and cures for MS. has become more important than ever.” said Bari Talente, Executive Vice President, Advocacy and Healthcare Access, National Multiple Sclerosis Society. “The National Neurological Conditions Surveillance System is in a position to provide vital information to researchers working to end multiple sclerosis and other neurological diseases. We are pressing for annual reauthorization and $10 million in federal funding.”

This law is endorsed by the American Neurological Association, the National Multiple Sclerosis Society, and the Michael J. Fox Foundation.

The text of the bill is available here.