SEC. 2. NATIONAL HYDROCEPHALUS SURVEILLANCE SYS-
TEM. 
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 HYDROCEPHALUS. 
‘‘(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 hydrocephalus; 
and 
‘‘(2) incorporate information obtained through 
such activities into a statistically sound, scientifically 
credible, integrated surveillance system, to be known 
as the National Hydrocephalus Surveillance System. 
‘‘(b) RESEARCH.—The Secretary shall ensure that 
the National Hydrocephalus Surveillance System is de-
signed in a manner that facilitates further research on hy-
drocephalus. 
‘‘(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 
hydrocephalus in the United States; 
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‘‘(2) to the extent practicable, shall provide for 
the collection and storage of other available informa-
tion on hydrocephalus, such as information con-
cerning— 
‘‘(A) demographics and other information 
associated or possibly associated with hydro-
cephalus, such as age, race, ethnicity, sex, geo-
graphic location, and family history; and 
‘‘(B) any changes over time with respect to 
the incidence and prevalence of hydrocephalus 
in children and adults; 
‘‘(3) may provide for the collection and storage 
of information relevant to analysis on hydrocephalus 
such as information concerning— 
‘‘(A) the epidemiology of the condition; 
‘‘(B) the history of congenital and acquired 
hydrocephalus; 
‘‘(C) the detection, management, and 
treatment approaches for the condition; 
‘‘(D) the events or influences that occur 
during fetal development, or genetic abnormali-
ties that lead to the condition; 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 hydrocephalus; 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 hydrocephalus 
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. 
‘‘(f) PUBLIC ACCESS.—Subject to subsection (g), the 
Secretary shall make information and analysis in the Na-
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tional Hydrocephalus Surveillance System available, as ap-
propriate, to the public, including researchers. 
‘‘(g) PRIVACY.—The Secretary shall ensure that pri-
vacy and security protections applicable to the National 
Hydrocephalus Surveillance System are at least as strin-
gent as the privacy and security protections under HIPAA 
privacy and security law (as defined in section 
3009(a)(2)). 
‘‘(h) 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— 
‘‘(1) the development and maintenance of the 
National Hydrocephalus Surveillance System; 
‘‘(2) the type of information collected and 
stored in the National Hydrocephalus Surveillance 
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 the National Hy-
drocephalus Surveillance System.’’. 
Æ 
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