[Congressional Bills 114th Congress]
[From the U.S. Government Publishing Office]
[H.R. 2313 Introduced in House (IH)]

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.

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

SECTION 1. SHORT TITLE.

    This Act may be cited as the ``Advancing Research for Hydrocephalus 
Act of 2015''.

SEC. 2. NATIONAL HYDROCEPHALUS SURVEILLANCE 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 HYDROCEPHALUS.

    ``(a) In General.--The Secretary, acting through the Director of 
the Centers for Disease Control and Prevention, shall--
            ``(1) enhance and expand infrastructure and activities 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 designed in a manner that 
facilitates further research on hydrocephalus.
    ``(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;
            ``(2) to the extent practicable, shall provide for the 
        collection and storage of other available information on 
        hydrocephalus, such as information concerning--
                    ``(A) demographics and other information associated 
                or possibly associated with hydrocephalus, such as age, 
                race, ethnicity, sex, geographic 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 abnormalities that lead 
                to the condition; and
                    ``(E) the development of outcomes measures; 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 appropriate 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 research, 
                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 conducting 
        translational research or utilizing surveillance 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 National Hydrocephalus 
Surveillance System available, as appropriate, to the public, including 
researchers.
    ``(g) Privacy.--The Secretary shall ensure that privacy and 
security protections applicable to the National Hydrocephalus 
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)).
    ``(h) Report.--Not later than 4 years after the date of the 
enactment of this section, the Secretary shall submit a report to the 
Congress concerning the implementation 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 information, 
        including guidelines for such use; and
            ``(4) the use and coordination of databases that collect or 
        maintain information on the National Hydrocephalus Surveillance 
        System.''.
                                 <all>