I 
114TH CONGRESS 
1ST SESSION 
H. R. 292 
To amend the Public Health Service Act to provide for systematic data 
collection and analysis and epidemiological research regarding Multiple 
Sclerosis (MS), Parkinson’s disease, and other neurological diseases. 
IN THE HOUSE OF REPRESENTATIVES 
JANUARY 13, 2015 
Mr. BURGESS (for himself, Mr. VAN HOLLEN, Mrs. CAROLYN B. MALONEY 
of New York, Mr. KING of New York, and Mr. BILIRAKIS) introduced 
the following bill; which was referred to the Committee on Energy and 
Commerce 
A BILL 
To amend the Public Health Service Act to provide for 
systematic data collection and analysis and epidemiolog-
ical research regarding Multiple Sclerosis (MS), Parkin-
son’s disease, and other neurological diseases. 
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 ‘‘Advancing Research 
for Neurological Diseases Act of 2015’’. 
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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 DISEASES. 
‘‘(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, scientif-
ically-credible, integrated surveillance system, to be 
known as the National Neurological Diseases Sur-
veillance 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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‘‘(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 as-
sociated with neurological diseases, including 
genetic 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; 
‘‘(D) the detection, management, and 
treatment approaches for the diseases; and 
‘‘(E) the development of outcomes meas-
ures; and 
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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 2015 through 
2019.’’. 
Æ 
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