[Congressional Bills 112th Congress]
[From the U.S. Government Publishing Office]
[S. 425 Introduced in Senate (IS)]

112th CONGRESS
  1st Session
                                 S. 425

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 SENATE OF THE UNITED STATES

                             March 1, 2011

  Mr. Udall of Colorado (for himself, Ms. Stabenow, Mr. Isakson, Mr. 
 Casey, and Mr. Johanns) introduced the following bill; which was read 
 twice and referred to the Committee on Health, Education, Labor, and 
                                Pensions

_______________________________________________________________________

                                 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 2011''.

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 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 
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) Definitions.--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 such sums as may be necessary 
for fiscal year 2012, and each of the 4 succeeding fiscal years.''.
                                 <all>