National Neurological Conditions Surveillance System

Policy and Legislative Background

The National Neurological Conditions Surveillance System (NNCSS) was introduced in the 114th Congress as the Advancing Research for Neurological Diseases Act of 2015 (H.R. 292/S. 849). The legislation garnered 129 bipartisan cosponsors in the House and 27 bipartisan cosponsors in the Senate. The language was included and signed into law in the 21st Century Cure Act in Section 2061 (Public Law No. 114-255). The NNCSS at the Centers for Disease Control and Prevention (CDC) will collect data to improve neurologic research. The 21st Century Cures Act authorized $5 million a year for the NNCSS from 2018-2022. However, Congress must separately appropriate this new funding to the CDC for the NNCSS. In the current appropriations and budget environment, finding new or additional funding for FY19 will prove difficult. TAA is working closely with other Neurological patient groups to advocate for the funding.

What would the NNCSS do?

NNCSS would collect information to provide a foundation for the evaluation and understanding of neurological conditions, such as: Incidence and prevalence; Geographic clusters of conditions; Demographic (age, sex, race) variability; Outcome measures; and Healthcare practices and utilization. NNCSS will utilize information from existing databases and sources such as Medicare, Medicaid and Veterans Affairs, as well as private insurance. This data will help to refine and target research and allow for better anticipation of healthcare needs and more efficient utilization of resources.