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The Centers for Disease Control and Prevention (CDC) has announced its plan to build and implement the National Neurological Conditions Surveillance System (NNCSS). This system was authorized by Congress as a part of the 21st Century Cures Act in 2016 but was not funded until the fiscal year 2019 Labor, Health and Human Services, and Education spending bill was signed into law in September. Obtaining Congressional funding and seeing the NNCSS implemented has been a top policy priority of the National MS Society for several years.

Rebecca of Detroit was diagnosed with multiple sclerosis in 2013.  Her father too lives with MS. “I can’t help but wonder if my daughter will hear ‘you have MS’ someday; my current neurologist says that her chance is 1 in 40. Without real, current data, MS researchers have difficulty identifying and pursuing potential leads of environmental or viral triggers for MS,” she said.

The CDC will launch the surveillance system by studying data for two diseases, multiple sclerosis and Parkinson’s disease. These will serve as demonstration projects to help the CDC determine areas of biggest impact for neurologic conditions. Using innovative methods and complex data sources, the CDC will gather information for these diseases and use similar methods to extend the NNCSS to other neurologic disease conditions. 

This system builds on the success of the Society’s prevalence initiative, a four-year study that used millions of health records to get a more accurate count of the number of people in the US living with MS.  Preliminary numbers show MS prevalence is actually more than twice the number previously thought. 

“The information gleaned from the Society’s prevalence initiative combined with the data from the NNCSS will help us better understand multiple sclerosis – who gets it and possible reasons why,” said Bari Talente, the Society’s Executive Vice President of Advocacy. “We look forward to working with the CDC to make sure the NNCSS collects information on incidence, age, race, ethnicity data, as well as geographic data that can help refine and target research we hope will lead to a cure.