[Congressional Bills 111th Congress]
[From the U.S. Government Publishing Office]
[H.R. 1362 Reported in House (RH)]
Union Calendar No. 376
111th CONGRESS
2d Session
H. R. 1362
[Report No. 111-636]
To amend the Public Health Service Act to provide for the establishment
of permanent national surveillance systems for multiple sclerosis,
Parkinson's disease, and other neurological diseases and disorders.
_______________________________________________________________________
IN THE HOUSE OF REPRESENTATIVES
March 5, 2009
Mr. Van Hollen (for himself, Mr. Burgess, Mrs. Maloney, Mr. Upton, Mr.
Carnahan, and Mr. King of New York) introduced the following bill;
which was referred to the Committee on Energy and Commerce
September 28, 2010
Additional sponsors: Ms. Lee of California, Mr. Taylor, Mr. Bishop of
Georgia, Mrs. Lummis, Mrs. Emerson, Mr. Andrews, Mr. Boucher, Mr. Moran
of Virginia, Ms. Bordallo, Ms. Hirono, Mr. McGovern, Mr. Farr, Mr.
DeFazio, Mr. Sires, Mr. Kucinich, Mr. Gordon of Tennessee, Mr.
McDermott, Mr. Welch, Mr. Connolly of Virginia, Mr. Oberstar, Mr. Lewis
of Georgia, Mr. Wolf, Ms. Kilpatrick of Michigan, Mr. Hinojosa, Ms.
Eshoo, Mr. Walden, Mr. Jones, Mr. Boswell, Mr. Spratt, Mr. Johnson of
Georgia, Mr. Patrick J. Murphy of Pennsylvania, Ms. Kaptur, Mr.
Yarmuth, Mr. Rogers of Alabama, Mr. Carson of Indiana, Mr. Holden, Mr.
Serrano, Mr. Wittman, Mr. Rothman of New Jersey, Ms. Baldwin, Mr.
Ruppersberger, Ms. Schakowsky, Mr. Buchanan, Mr. Terry, Mr. Culberson,
Mr. Young of Alaska, Mr. Moran of Kansas, Mr. Bachus, Mr. George Miller
of California, Ms. Linda T. Sanchez of California, Mr. Sestak, Mr.
Rush, Mr. Space, Ms. Schwartz, Mr. Davis of Alabama, Mrs. Schmidt, Mr.
Gerlach, Mr. Cleaver, Mr. Hare, Mr. Lee of New York, Ms. Fudge, Mr.
Putnam, Ms. Castor of Florida, Mr. Levin, Mr. Fortenberry, Ms. Woolsey,
Mr. McCarthy of California, Mr. Mitchell, Mr. Boyd, Mr. Latham, Ms.
DeGette, Mr. Souder, Mr. Donnelly of Indiana, Mr. Platts, Mr. Ross,
Mrs. Blackburn, Mr. Cohen, Mrs. Capps, Mr. Abercrombie, Mr. Altmire,
Mr. Filner, Mr. Ellison, Mr. Coble, Mr. Forbes, Ms. Roybal-Allard, Mr.
Peterson, Mr. Gene Green of Texas, Mr. Davis of Illinois, Mr. Dicks,
Mr. Holt, Mr. Himes, Mr. Kennedy, Mr. Klein of Florida, Mr. Pascrell,
Mr. Gallegly, Mr. Reichert, Mr. Sessions, Mr. Harper, Mr. Inslee, Ms.
Wasserman Schultz, Mr. Snyder, Mr. Rehberg, Mrs. Biggert, Mr. Miller of
North Carolina, Mr. Young of Florida, Mr. Cao, Mr. Hodes, Mr. McCotter,
Mr. Turner, Mr. Crenshaw, Ms. Berkley, Ms. Matsui, Mr. Driehaus, Mr.
Posey, Mr. Bishop of New York, Ms. DeLauro, Mr. Baird, Mr. Langevin,
Mr. Lipinski, Mr. Lincoln Diaz-Balart of Florida, Mr. Ehlers, Mr.
Berman, Mr. Murphy of Connecticut, Mr. Wilson of South Carolina, Mr.
Braley of Iowa, Mr. Wu, Mr. LoBiondo, Mr. Moore of Kansas, Mr. Honda,
Mr. Manzullo, Mr. LaTourette, Mr. Gonzalez, Mr. Boccieri, Mr. McNerney,
Mr. Olver, Mr. Price of North Carolina, Mr. Boozman, Mr. Schiff, Mr.
Kirk, Mr. Roe of Tennessee, Mrs. Davis of California, Mr. Tiberi, Mr.
Thompson of California, Mr. Hinchey, Ms. McCollum, Mr. Calvert, Mr.
Stark, Mr. Massa, Mr. Frank of Massachusetts, Mr. Hall of New York, Mr.
Thornberry, Ms. Kosmas, Mr. Scott of Virginia, Mr. Miller of Florida,
Mr. Austria, Mr. Blunt, Mr. Markey of Massachusetts, Mr. Michaud, Mr.
Marshall, Mr. Gingrey of Georgia, Mr. Boren, Mr. Towns, Mr. Castle, Mr.
Chaffetz, Mr. Weiner, Ms. Norton, Mr. Pitts, Mr. Kline of Minnesota,
Ms. Loretta Sanchez of California, Mr. Melancon, Mr. Frelinghuysen, Mr.
Matheson, Ms. Sutton, Ms. Moore of Wisconsin, Mr. Nye, Mr. Heinrich,
Mr. Deutch, Mr. Blumenauer, Mr. Guthrie, Mr. Tiahrt, Mr. Nadler of New
York, Mrs. McMorris Rodgers, Mr. Schock, Ms. Pingree of Maine, Mr.
Costa, Mr. Fattah, Ms. Edwards of Maryland, Ms. Clarke, Mrs.
Dahlkemper, Mr. Higgins, Mrs. Christensen, Mr. Thompson of Mississippi,
Mrs. Napolitano, Mr. Larsen of Washington, Mr. Luetkemeyer, Mr.
Costello, Mr. Wilson of Ohio, Mr. Graves of Missouri, Mr. Kissell, Ms.
Speier, and Mr. Dent
September 28, 2010
Reported with an amendment, committed to the Committee of the Whole
House on the State of the Union, and ordered to be printed
[Strike out all after the enacting clause and insert the part printed
in italic]
[For text of introduced bill, see copy of bill as introduced on March
5, 2009]
_______________________________________________________________________
A BILL
To amend the Public Health Service Act to provide for the establishment
of permanent national surveillance systems for multiple sclerosis,
Parkinson's disease, and other neurological diseases and disorders.
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 ``National Neurological Diseases
Surveillance System Act of 2010''.
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-5 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 2012 through 2016.''.
Union Calendar No. 376
111th CONGRESS
2d Session
H. R. 1362
[Report No. 111-636]
_______________________________________________________________________
A BILL
To amend the Public Health Service Act to provide for the establishment
of permanent national surveillance systems for multiple sclerosis,
Parkinson's disease, and other neurological diseases and disorders.
_______________________________________________________________________
September 28, 2010
Reported with an amendment, committed to the Committee of the Whole
House on the State of the Union, and ordered to be printed