I 114th CONGRESS 1st Session H. R. 2313 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. Short title This Act may be cited as the Advancing Research for Hydrocephalus Act of 2015 . 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: 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. .