§280g–7a Surveillance of Neurological Diseases

Summary

The Secretary, working through the CDC Director and with other agencies as needed, must create and grow a National Neurological Conditions Surveillance System (which can include a registry). The system must track how often neurological diseases occur and how common they are in the U.S. It must be designed to help future research. It should, when possible, collect other useful information from people who join, like basic demographics, possible risk factors (including genetic and environmental), diagnosis and signs of disease progression, and, if practical, data about disease history, prevention, detection, care and treatment, and outcome measures. The system may start with a small number of conditions. The Secretary must consult experts such as epidemiologists, national voluntary health associations focused on neurological disease, health IT specialists, clinicians, and research scientists. Grants and contracts with nonprofits may be used to help build the system. Data and analyses should be shared, as appropriate, with federal, state, and local agencies and with the public and researchers, but only as allowed by federal and state law and in ways that protect personal privacy. An interim report must be sent within 1 year after the system begins to the Senate Committee on Health, Education, Labor, and Pensions and the House Committee on Energy and Commerce and posted on HHS’s website, and it must be updated every two years. A report on implementation was required no later than 4 years after December 13, 2016 and must cover system development, the types of information collected, rules for use and availability, and coordination with other databases. A “national voluntary health association” means a national nonprofit with state chapters that serves people with neurological disease and has experience in research, care, and patient services. Up to $5,000,000 is authorized for each fiscal year 2018 through 2022 to carry out these activities.