42 U.S.C. § 280g: Surveillance of neurological diseases

enhance and expand infrastructure and activities to track the epidemiology of neurological diseases; and incorporate information obtained through such activities into an integrated surveillance system, which may consist of or include a registry, to be known as the National Neurological Conditions Surveillance System. The Secretary shall ensure that the National Neurological Conditions Surveillance System is designed in a manner that facilitates further research on neurological diseases. shall provide for the collection and storage of information on the incidence and prevalence of neurological diseases in the United States; demographics, such as age, race, ethnicity, sex, geographic location, family history, and other information, as appropriate; risk factors that may be associated with neurological diseases, such as genetic and environmental risk factors and other information, as appropriate; and diagnosis and progression markers; the natural history of the diseases; the prevention of the diseases; the detection, management, and treatment approaches for the diseases; and the development of outcomes measures; may address issues identified during the consultation process under subsection (d); and initially may address a limited number of neurological diseases. epidemiologists with experience in disease surveillance or registries; focus on neurological diseases; and have demonstrated experience in research, care, or patient services; health information technology experts or other information management specialists; clinicians with expertise in neurological diseases; and research scientists with experience conducting translational research or utilizing surveillance systems for scientific research purposes. The Secretary may award grants to, or enter into contracts or cooperative agreements with, public or private nonprofit entities to carry out activities under this section. to Federal departments and agencies, such as the National Institutes of Health and the Department of Veterans Affairs; and to State and local agencies; and identify, build upon, leverage, and coordinate among existing data and surveillance systems, surveys, registries, and other Federal public health infrastructure, wherever practicable. Subject to subsection (h), the Secretary shall ensure that information and analysis in the National Neurological Conditions Surveillance System are available, as appropriate, to the public, including researchers. The Secretary shall ensure that information and analysis in the National Neurological Conditions Surveillance System are made available only to the extent permitted by applicable Federal and State law, and in a manner that protects personal privacy, to the extent required by applicable Federal and State privacy law, at a minimum. Not later than 1 year after the date on which any system is established under this section, the Secretary shall submit an interim report to the Committee on Health, Education, Labor, and Pensions of the Senate and the Committee on Energy and Commerce of the House of Representatives regarding aggregate information collected pursuant to this section and epidemiological analyses, as appropriate. Such report shall be posted on the Internet website of the Department of Health and Human Services and shall be updated biennially. the development and maintenance of the National Neurological Conditions Surveillance System; the type of information collected and stored in the surveillance system; the use and availability of such information, including guidelines for such use; and the use and coordination of databases that collect or maintain information on neurological diseases. In this section, the term “national voluntary health association” means a national nonprofit organization with chapters, other affiliated organizations, or networks in States throughout the United States with experience serving the population of individuals with neurological disease and have demonstrated experience in neurological disease research, care, and patient services. To carry out this section, there is authorized to be appropriated $5,000,000 for each of fiscal years 2018 through 2022.