IIB 
111TH CONGRESS 
2D SESSION 
H. R. 1362 
IN THE SENATE OF THE UNITED STATES 
SEPTEMBER 29, 2010 
Received; read twice and referred to the Committee on Health, Education, 
Labor, and Pensions 
AN ACT 
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, 
VerDate Mar 15 2010 
00:57 Oct 01, 2010
Jkt 089200
PO 00000
Frm 00001
Fmt 6652
Sfmt 6201
E:\BILLS\H1362.RFS
H1362
smartinez on DSKB9S0YB1PROD with BILLS
HR 1362 RFS
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 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. 
VerDate Mar 15 2010 
00:57 Oct 01, 2010
Jkt 089200
PO 00000
Frm 00002
Fmt 6652
Sfmt 6201
E:\BILLS\H1362.RFS
H1362
smartinez on DSKB9S0YB1PROD with BILLS
HR 1362 RFS
‘‘(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 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 
VerDate Mar 15 2010 
00:57 Oct 01, 2010
Jkt 089200
PO 00000
Frm 00003
Fmt 6652
Sfmt 6201
E:\BILLS\H1362.RFS
H1362
smartinez on DSKB9S0YB1PROD with BILLS
HR 1362 RFS
‘‘(E) the development of outcomes meas-
ures; 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 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, 
VerDate Mar 15 2010 
00:57 Oct 01, 2010
Jkt 089200
PO 00000
Frm 00004
Fmt 6652
Sfmt 6201
E:\BILLS\H1362.RFS
H1362
smartinez on DSKB9S0YB1PROD with BILLS
HR 1362 RFS
public 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 
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-
VerDate Mar 15 2010 
00:57 Oct 01, 2010
Jkt 089200
PO 00000
Frm 00005
Fmt 6652
Sfmt 6201
E:\BILLS\H1362.RFS
H1362
smartinez on DSKB9S0YB1PROD with BILLS
HR 1362 RFS
tion 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 appro-
priated $5,000,000 for each of fiscal years 2012 through 
2016.’’. 
Passed the House of Representatives September 28, 
2010. 
Attest: 
LORRAINE C. MILLER, 
Clerk. 
VerDate Mar 15 2010 
00:57 Oct 01, 2010
Jkt 089200
PO 00000
Frm 00006
Fmt 6652
Sfmt 6201
E:\BILLS\H1362.RFS
H1362
smartinez on DSKB9S0YB1PROD with BILLS