[Congressional Bills 114th Congress]
[From the U.S. Government Publishing Office]
[H.R. 292 Introduced in House (IH)]
114th CONGRESS
1st Session
H. R. 292
To amend the Public Health Service Act to provide for systematic data
collection and analysis and epidemiological research regarding Multiple
Sclerosis (MS), Parkinson's disease, and other neurological diseases.
_______________________________________________________________________
IN THE HOUSE OF REPRESENTATIVES
January 13, 2015
Mr. Burgess (for himself, Mr. Van Hollen, Mrs. Carolyn B. Maloney of
New York, Mr. King of New York, and Mr. Bilirakis) introduced the
following bill; which was referred to the Committee on Energy and
Commerce
_______________________________________________________________________
A BILL
To amend the Public Health Service Act to provide for systematic data
collection and analysis and epidemiological research regarding Multiple
Sclerosis (MS), Parkinson's disease, and other neurological diseases.
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 Neurological
Diseases Act of 2015''.
SEC. 2. NATIONAL NEUROLOGICAL DISEASES 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 NEUROLOGICAL DISEASES.
``(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 neurological diseases, including
multiple sclerosis and Parkinson's disease; and
``(2) incorporate information obtained through such
activities into a statistically-sound, scientifically-credible,
integrated surveillance system, to be known as the National
Neurological Diseases Surveillance 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.
``(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 information on
neurological diseases, such as information concerning--
``(A) demographics and other information associated
or possibly associated with neurological diseases, such
as age, race, ethnicity, sex, geographic location, and
family history;
``(B) risk factors associated or possibly
associated 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
``(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 neurological diseases, including
multiple sclerosis and Parkinson's disease; 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 neurological 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) Coordination With Other Federal Agencies.--Subject to
subsection (h), the Secretary shall make information and analysis in
the National Neurological Diseases 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 National Neurological
Diseases Surveillance System available, as appropriate, to the public,
including researchers.
``(h) Privacy.--The Secretary shall ensure that privacy 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 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
Neurological Diseases Surveillance System;
``(2) the type of information collected and stored in the
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 neurological diseases.
``(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 appropriated $5,000,000 for each of fiscal
years 2015 through 2019.''.
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