Be it enacted by the Senate and House of Representa-
tives of the United States of America in Congress assembled, 
SECTION 1. SHORT TITLE. 
This Act may be cited as the ‘‘National Neurological 
Diseases Surveillance System Act of 2010’’. 
SEC. 2. NATIONAL NEUROLOGICAL DISEASES SURVEIL-
LANCE SYSTEM. 
Part P of title III of the Public Health Service Act 
(42 U.S.C. 280g et seq.) is amended by adding at the end 
the following: 
‘‘SEC. 399V–5 SURVEILLANCE OF NEUROLOGICAL DISEASES. 
‘‘(a) IN GENERAL.—The Secretary, acting through the 
Director of the Centers for Disease Control and Prevention, 
shall— 
‘‘(1) enhance and expand infrastructure and ac-
tivities to track the epidemiology of neurological dis-
eases, including multiple sclerosis and Parkinson’s 
disease; and 
‘‘(2) incorporate information obtained through 
such activities into a statistically-sound, scientif-
ically-credible, integrated surveillance system, to be 
known as the National Neurological Diseases Surveil-
lance System. 
‘‘(b) RESEARCH.—The Secretary shall ensure that the 
National Neurological Diseases Surveillance System is de-
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signed in a manner that facilitates further research on neu-
rological diseases. 
‘‘(c) CONTENT.—In 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 informa-
tion on neurological diseases, such as information 
concerning— 
‘‘(A) demographics and other information 
associated or possibly associated with neuro-
logical diseases, such as age, race, ethnicity, sex, 
geographic location, and family history; 
‘‘(B) risk factors associated or possibly asso-
ciated with neurological diseases, including ge-
netic and environmental risk factors; 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 epidemiology of the diseases; 
‘‘(B) the natural history of the diseases; 
‘‘(C) the prevention of the diseases; 
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‘‘(D) the detection, management, and treat-
ment approaches for the diseases; and 
‘‘(E) the development of outcomes measures; 
and 
‘‘(4) may address issues identified during the 
consultation process under subsection (d). 
‘‘(d) CONSULTATION.—In carrying out this section, the 
Secretary shall consult with individuals with appropriate 
expertise, including— 
‘‘(1) epidemiologists with experience in disease 
surveillance or registries; 
‘‘(2) representatives of national voluntary health 
associations that— 
‘‘(A) focus on neurological diseases, includ-
ing multiple sclerosis and Parkinson’s disease; 
and 
‘‘(B) have demonstrated experience in re-
search, 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 con-
ducting translational research or utilizing surveil-
lance systems for scientific research purposes. 
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‘‘(e) GRANTS.—The Secretary may award grants to, 
or enter into contracts or cooperative agreements with, pub-
lic or private nonprofit entities to carry out activities under 
this section. 
‘‘(f) COORDINATION WITH OTHER FEDERAL AGEN-
CIES.—Subject to subsection (h), the Secretary shall make 
information and analysis in the National Neurological Dis-
eases Surveillance System available, as appropriate, to Fed-
eral departments and agencies, such as the National Insti-
tutes of Health, the Food and Drug Administration, the 
Centers for Medicare & Medicaid Services, the Agency for 
Healthcare Research and Quality, the Department of Vet-
erans Affairs, and the Department of Defense. 
‘‘(g) PUBLIC ACCESS.—Subject to subsection (h), the 
Secretary shall make information and analysis in the Na-
tional Neurological Diseases Surveillance System available, 
as appropriate, to the public, including researchers. 
‘‘(h) PRIVACY.—The Secretary shall ensure that pri-
vacy and security protections applicable to the National 
Neurological Diseases Surveillance System are at least as 
stringent as the privacy and security protections under 
HIPAA privacy and security law (as defined in section 
3009(a)(2)). 
‘‘(i) REPORT.—Not later than 4 years after the date 
of the enactment of this section, the Secretary shall submit 
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a report to the Congress concerning the implementation of 
this section. Such report shall include information on— 
‘‘(1) the development and maintenance of the 
National Neurological Diseases Surveillance System; 
‘‘(2) the type of information collected and stored 
in the System; 
‘‘(3) the use and availability of such informa-
tion, including guidelines for such use; and 
‘‘(4) the use and coordination of databases that 
collect or maintain information on neurological dis-
eases. 
‘‘(j) DEFINITION.—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. 
‘‘(k) AUTHORIZATION OF APPROPRIATIONS.—To carry 
out this section, there is authorized to be appropriated 
$5,000,000 for each of fiscal years 2012 through 2016.’’. 
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Union Calendar No. 376 
111TH CONGRESS 
2D SESSION 
H. R. 1362 
[Report No. 111–636] 
A BILL 
To amend the Public Health Service Act to provide 
for the establishment of permanent national sur-
veillance systems for multiple sclerosis, Parkin-
son’s disease, and other neurological diseases and 
disorders. 
SEPTEMBER 28, 2010 
Reported with an amendment, committed to the Com-
mittee of the Whole House on the State of the Union, 
and ordered to be printed 
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