42 U.S.C. § 280g–7a — Surveillance of neurological diseases

(a) In general. The Secretary, through the CDC Director and working with other agencies as needed, shall, where appropriate, (1) expand efforts to track how common neurological diseases are, and (2) fold that information into one surveillance system — which may include a registry — called the National Neurological Conditions Surveillance System. (b) Research. The Secretary must design the System so it helps further research into neurological diseases. (c) Content. In building the System, the Secretary (1) must collect and store data on how common neurological diseases are in the U.S.; (2) must, where practical, also collect other available information from people with neurological diseases who choose to take part, such as (A) demographics like age, race, ethnicity, sex, location, and family history; (B) risk factors such as genetic and environmental causes; and (C) how the disease is diagnosed and how it progresses; (3) may collect information useful for analysis, such as (A) the disease's natural course, (B) how to prevent it, (C) ways to detect, manage, and treat it, and (D) how to measure outcomes; (4) may address issues raised during the consultation process in (d); and (5) may start by covering only a limited number of diseases. (d) Consultation. The Secretary must consult experts, which may include (1) epidemiologists experienced in disease surveillance, (2) representatives of national health associations focused on neurological disease with research, care, or patient-service experience, (3) health IT or information management experts, (4) clinicians who treat neurological diseases, and (5) research scientists who do translational research or use surveillance systems. (e) Grants. The Secretary may award grants, contracts, or cooperative agreements to public or private nonprofits to carry out this work. (f) Coordination with other agencies. Subject to (h), the Secretary shall (1) share the System's information and analysis, as appropriate, with (A) federal agencies like NIH and the VA and (B) state and local agencies; and (2) build on and coordinate with existing data systems wherever practical. (g) Public access. Subject to (h), the Secretary must make the System's information available, as appropriate, to the public, including researchers. (h) Privacy. The Secretary must share System information only as far as federal and state law allow, and must protect personal privacy at least as much as those privacy laws require. (i) Reports. (1) Within 1 year after any part of the System is set up, the Secretary must send Congress an interim report on the data collected and any analysis, post it online, and update it every two years. (2) Within 4 years after December 13, 2016, the Secretary must report to Congress on how the section was implemented, covering (A) how the System was built and is maintained, (B) what information it collects, (C) how that information is used and shared, including usage guidelines, and (D) how databases on neurological disease are used and coordinated. (j) Definition. A "national voluntary health association" is a national nonprofit with state chapters, affiliates, or networks that has experience serving people with neurological disease and a track record in related research, care, and patient services. (k) Authorization of appropriations. Congress authorized $5,000,000 for each of fiscal years 2018 through 2022 to carry out this section.