Surveillance of neurological diseases

42 U.S.C. § 280g–7a
in effect
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(a) In generalThe Secretary, acting through the Director of the Centers for Disease Control and Prevention and in coordination with other agencies as the Secretary determines, shall, as appropriate—(1) enhance and expand infrastructure and activities to track the epidemiology of neurological diseases; and (2) 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. (b) ResearchThe Secretary shall ensure that the National Neurological Conditions Surveillance System is designed in a manner that facilitates further research on neurological diseases. (c) ContentIn carrying out subsection (a), the Secretary—(1) shall provide for the collection and storage of information on the incidence and prevalence of neurological diseases in the United States; (2) to the extent practicable, shall provide for the collection and storage of other available information on neurological diseases, including information related to persons living with neurological diseases who choose to participate, such as—(A) demographics, such as age, race, ethnicity, sex, geographic location, family history, and other information, as appropriate; (B) risk factors that may be associated with neurological diseases, such as genetic and environmental risk factors and other information, as appropriate; and (C) diagnosis and progression markers; (3) may provide for the collection and storage of information relevant to analysis on neurological diseases, such as information concerning—(A) the natural history of the diseases; (B) the prevention of the diseases; (C) the detection, management, and treatment approaches for the diseases; and (D) the development of outcomes measures; (4) may address issues identified during the consultation process under subsection (d); and (5) initially may address a limited number of neurological diseases. (d) ConsultationIn carrying out this section, the Secretary shall consult with individuals with appropriate expertise, which may include—(1) epidemiologists with experience in disease surveillance or registries; (2) representatives of national voluntary health associations that—(A) focus on neurological diseases; and (B) have demonstrated experience in research, care, or patient services; (3) health information technology experts or other information management specialists; (4) clinicians with expertise in neurological diseases; and (5) research scientists with experience conducting translational research or utilizing surveillance systems for scientific research purposes. (e) GrantsThe 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. (f) Coordination with other Federal, State, and local agenciesSubject to subsection (h), the Secretary shall—(1) make information and analysis in the National Neurological Conditions Surveillance System available, as appropriate—(A) to Federal departments and agencies, such as the National Institutes of Health and the Department of Veterans Affairs; and (B) to State and local agencies; and (2) identify, build upon, leverage, and coordinate among existing data and surveillance systems, surveys, registries, and other Federal public health infrastructure, wherever practicable. (g) Public accessSubject 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. (h) PrivacyThe 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. (i) Reports(1) Report on information and analysesNot 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. (2) Implementation reportNot later than 4 years after December 13, 2016, the Secretary shall submit a report to the Congress concerning the implementation of this section. Such report shall include information on—(A) the development and maintenance of the National Neurological Conditions Surveillance System; (B) the type of information collected and stored in the surveillance system; (C) the use and availability of such information, including guidelines for such use; and (D) the use and coordination of databases that collect or maintain information on neurological diseases. (j) DefinitionIn 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. (k) Authorization of appropriationsTo carry out this section, there is authorized to be appropriated $5,000,000 for each of fiscal years 2018 through 2022.

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