The U.S. Congress is supporting with $5 million the National Neurological Conditions Surveillance System (NNCSS), an initiative to be launched by the Centers for Disease Control and Prevention (CDC) to help researchers better understand who develops neurological disorders and why.
The NNCSS was authorized by Congress as a part of the 21st Century Cures Act, signed into law Dec. 13, 2016, but was not funded until fiscal year 2019 when the Labor, Health and Human Services, and Education spending bill was signed in September.
Funding and implementing the NNCSS has been a priority of the National Multiple Sclerosis Society.
The surveillance system will focus initially on two diseases, multiple sclerosis (MS) and Parkinson’s disease, and will serve as demonstration projects to help the CDC determine which areas are most affected by neurological conditions.
The purpose of NNCSS is to expand surveillance of neurological conditions. With improved data collection, it may be possible, for instance, to identify environmental or viral triggers of 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,” Rebecca, a MS patient from Detroit said in a MS Society press release. Rebecca was diagnosed in 2013; her father also has MS.
The NNCSS will build on the success of the MS Society Prevalence Initiative, launched in 2014, with leading experts in MS epidemiology, statistics and healthcare, who utilized information from Medicare, Medicaid, the Veteran’s Health Administration, and private insurers to determine the number of people in the U.S. affected by MS.
Preliminary results from that study indicated that nearly 1 million people in the U.S. have MS, more than twice the previously reported number.
“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,” Talente said.