I 
112TH CONGRESS 
1ST SESSION H. R. 2595 
To amend the Public Health Service Act to provide for the establishment 
of permanent national surveillance systems for multiple sclerosis, Parkin-
son’s disease, and other neurological diseases and disorders. 
IN THE HOUSE OF REPRESENTATIVES 
JULY 20, 2011 
Mr. VAN HOLLEN (for himself, Mr. BURGESS, Mr. TIBERI, Mr. CARNAHAN, 
Mr. SCHOCK, Mrs. BLACKBURN, Mr. TERRY, Mr. FORTENBERRY, Mr. 
KING of New York, Mr. LATOURETTE, Mr. POSEY, Mr. THORNBERRY, 
Mrs. MCMORRIS RODGERS, Mr. WILSON of South Carolina, Mr. WOLF, 
Mr. WITTMAN, Mr. LATHAM, Ms. LEE of California, Mrs. MALONEY, Mr. 
RUNYAN, Mr. DEUTCH, Ms. CLARKE of New York, Mr. GRIJALVA, and 
Mr. ENGEL) introduced the following bill; which was referred to the Com-
mittee on Energy and Commerce 
A BILL 
To amend the Public Health Service Act to provide for 
the establishment of permanent national surveillance sys-
tems for multiple sclerosis, Parkinson’s disease, and 
other neurological diseases and disorders. 
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 2011’’. 
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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–6. SURVEILLANCE OF NEUROLOGICAL DIS-
EASES. 
‘‘(a) IN GENERAL.—The Secretary, acting through 
the Director of the Centers for Disease Control and Pre-
vention, 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, scientifically 
credible, integrated surveillance system, to be known 
as the National Neurological Diseases Surveillance 
System. 
‘‘(b) RESEARCH.—The Secretary shall ensure that 
the National Neurological Diseases Surveillance System is 
designed in a manner that facilitates further research on 
neurological diseases. 
‘‘(c) CONTENT.—In carrying out subsection (a), the 
Secretary— 
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‘‘(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 appro-
priate 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. 
‘‘(e) GRANTS.—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. 
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‘‘(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 
Federal departments and agencies, such as the National 
Institutes of Health, the Food and Drug Administration, 
the Centers for Medicare & Medicaid Services, the Agency 
for Healthcare Research and Quality, the Department of 
Veterans 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 avail-
able, 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 sub-
mit a report to the Congress concerning the implementa-
tion of this section. Such report shall include information 
on— 
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‘‘(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 appro-
priated $5,000,000 for each of fiscal years 2012 through 
2016.’’. 
Æ 
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