I 

114TH CONGRESS 

1ST SESSION H. R. 2313 

To amend the Public Health Service Act to enhance and expand infrastructure 

and activities to track the epidemiology of hydrocephalus, and for other 

purposes. 

IN THE HOUSE OF REPRESENTATIVES 

MAY 13, 2015 

Mr. SMITH of New Jersey introduced the following bill; which was referred 

to the Committee on Energy and Commerce 

A BILL 

To amend the Public Health Service Act to enhance and 

expand infrastructure and activities to track the epidemiology of hydrocephalus, and for other purposes. 

1 Be it enacted by the Senate and House of Representa2 tives of the United States of America in Congress assembled, 

3 SECTION 1. SHORT TITLE. 

4 This Act may be cited as the ‘‘Advancing Research 

5 for Hydrocephalus Act of 2015’’. 


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1 SEC. 2. NATIONAL HYDROCEPHALUS SURVEILLANCE SYS2 TEM. 

3 Part P of title III of the Public Health Service Act 

4 (42 U.S.C. 280g et seq.) is amended by adding at the end 

5 the following: 

6 ‘‘SEC. 399V–6. SURVEILLANCE OF HYDROCEPHALUS. 

7 ‘‘(a) IN GENERAL.—The Secretary, acting through 

8 the Director of the Centers for Disease Control and Pre9 vention, shall— 

10 ‘‘(1) enhance and expand infrastructure and ac11 tivities to track the epidemiology of hydrocephalus; 

12 and 

13 ‘‘(2) incorporate information obtained through 

14 such activities into a statistically sound, scientifically 

15 credible, integrated surveillance system, to be known 

16 as the National Hydrocephalus Surveillance System. 

17 ‘‘(b) RESEARCH.—The Secretary shall ensure that 

18 the National Hydrocephalus Surveillance System is de19 signed in a manner that facilitates further research on hy20 drocephalus. 

21 ‘‘(c) CONTENT.—In carrying out subsection (a), the 

22 Secretary— 

23 ‘‘(1) shall provide for the collection and storage 

24 of information on the incidence and prevalence of 

25 hydrocephalus in the United States; 


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1 ‘‘(2) to the extent practicable, shall provide for 

2 the collection and storage of other available informa3 tion on hydrocephalus, such as information con4 cerning— 

5 ‘‘(A) demographics and other information 

6 associated or possibly associated with hydro7 cephalus, such as age, race, ethnicity, sex, geo8 graphic location, and family history; and 

9 ‘‘(B) any changes over time with respect to 

10 the incidence and prevalence of hydrocephalus 

11 in children and adults; 

12 ‘‘(3) may provide for the collection and storage 

13 of information relevant to analysis on hydrocephalus 

14 such as information concerning— 

15 ‘‘(A) the epidemiology of the condition; 

16 ‘‘(B) the history of congenital and acquired 

17 hydrocephalus; 

18 ‘‘(C) the detection, management, and 

19 treatment approaches for the condition; 

20 ‘‘(D) the events or influences that occur 

21 during fetal development, or genetic abnormali22 ties that lead to the condition; and 

23 ‘‘(E) the development of outcomes meas24 ures; and 


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1 ‘‘(4) may address issues identified during the 

2 consultation process under subsection (d). 

3 ‘‘(d) CONSULTATION.—In carrying out this section, 

4 the Secretary shall consult with individuals with appro5 priate expertise, including— 

6 ‘‘(1) epidemiologists with experience in disease 

7 surveillance or registries; 

8 ‘‘(2) representatives of national voluntary 

9 health associations that— 

10 ‘‘(A) focus on hydrocephalus; and 

11 ‘‘(B) have demonstrated experience in re12 search, care, or patient services; 

13 ‘‘(3) health information technology experts or 

14 other information management specialists; 

15 ‘‘(4) clinicians with expertise in hydrocephalus 

16 diseases; and 

17 ‘‘(5) research scientists with experience con18 ducting translational research or utilizing surveil19 lance systems for scientific research purposes. 

20 ‘‘(e) GRANTS.—The Secretary may award grants to, 

21 or enter into contracts or cooperative agreements with, 

22 public or private nonprofit entities to carry out activities 

23 under this section. 

24 ‘‘(f) PUBLIC ACCESS.—Subject to subsection (g), the 

25 Secretary shall make information and analysis in the NaVerDate Sep 11 2014 23:46 May 15, 2015 Jkt 049200 PO 00000 Frm 00004 Fmt 6652 Sfmt 6201 E:\BILLS\H2313.IH H2313

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1 tional Hydrocephalus Surveillance System available, as ap2 propriate, to the public, including researchers. 

3 ‘‘(g) PRIVACY.—The Secretary shall ensure that pri4 vacy and security protections applicable to the National 

5 Hydrocephalus Surveillance System are at least as strin6 gent as the privacy and security protections under HIPAA 

7 privacy and security law (as defined in section 

8 3009(a)(2)). 

9 ‘‘(h) REPORT.—Not later than 4 years after the date 

10 of the enactment of this section, the Secretary shall sub11 mit a report to the Congress concerning the implementa12 tion of this section. Such report shall include information 

13 on— 

14 ‘‘(1) the development and maintenance of the 

15 National Hydrocephalus Surveillance System; 

16 ‘‘(2) the type of information collected and 

17 stored in the National Hydrocephalus Surveillance 

18 System; 

19 ‘‘(3) the use and availability of such informa20 tion, including guidelines for such use; and 

21 ‘‘(4) the use and coordination of databases that 

22 collect or maintain information on the National Hy23 drocephalus Surveillance System.’’. 

Æ 


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