[Congressional Bills 113th Congress]
[From the U.S. Government Publishing Office]
[H.R. 4251 Introduced in House (IH)]

113th CONGRESS
  2d Session
                                H. R. 4251

 To direct the Secretary of Health and Human Services, acting through 
  the Director of the Centers for Disease Control and Prevention, to 
 establish a surveillance system regarding traumatic brain injury, and 
                          for other purposes.


_______________________________________________________________________


                    IN THE HOUSE OF REPRESENTATIVES

                             March 14, 2014

  Mr. Pascrell (for himself and Mr. Rooney) introduced the following 
    bill; which was referred to the Committee on Energy and Commerce

_______________________________________________________________________

                                 A BILL


 
 To direct the Secretary of Health and Human Services, acting through 
  the Director of the Centers for Disease Control and Prevention, to 
 establish a surveillance system regarding traumatic brain injury, 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 ``National Traumatic Brain Injury 
Research and Treatment Improvement Act of 2014''.

SEC. 2. FINDINGS.

    (a) Findings.--The Congress finds as follows:
            (1) State data and monitoring systems provide reliable data 
        on injury causes and risk factors, identify trends in the 
        incidence of traumatic brain injury, enable the development of 
        cause-specific prevention strategies focused on populations at 
        greatest risk, and monitor the effectiveness of such 
        strategies.
            (2) Since 1995, when the Centers for Disease Control and 
        Prevention published Guidelines for Surveillance of Central 
        Nervous System Injury, additional causes of traumatic brain 
        injury have emerged: military-related traumatic brain injuries; 
        sports-related concussions; traffic injuries resulting from 
        texting while driving; and increasing numbers of falls-related 
        traumatic brain injuries among older adults.
            (3) In their 2013 report, Sports-Related Concussions in 
        Youth: Improving the Science, Changing the Culture, the 
        Institute on Medicine and the National Research Council noted 
        that there is currently a lack of data to accurately estimate 
        the incidence of sports-related concussions across a variety of 
        sports and for youth across the pediatric age spectrum. The 
        report recommended that the Centers for Disease Control and 
        Prevention establish and oversee a national surveillance system 
        to accurately determine the incidence of sports-related 
        concussions, including those in youth ages 5 to 21, taking into 
        account Federal efforts to collect information on traumatic 
        brain injury.
            (4) Traumatic brain injury is a substantial public health 
        problem among older persons. As the population of older persons 
        continues to grow in the United States, the need to design and 
        implement proven and cost-effective prevention measures that 
        focus on the leading causes of traumatic brain injury becomes 
        more urgent.
            (5) In order to implement this Act, the Centers for Disease 
        Control and Prevention needs to collaborate with Federal 
        agencies reporting military-related traumatic brain injuries, 
        school systems reporting traumatic brain injuries, Medicaid and 
        other Federal programs, and State agencies.

SEC. 3. ESTABLISHING REQUIREMENTS TO IMPROVE THE RESEARCH AND TREATMENT 
              OF TRAUMATIC BRAIN INJURY.

    (a) In General.--The Secretary, acting through the Director of the 
Centers for Disease Control and Prevention, shall--
            (1) evaluate existing surveillance and data collections 
        systems that track the incidence and circumstances of traumatic 
        brain injury, including concussion;
            (2) not later than 9 months after the date of enactment of 
        this Act, submit a report to the Congress outlining the 
        findings of the evaluation under paragraph (1); and
            (3) establish a statistically sound, scientifically 
        credible, integrated surveillance system regarding traumatic 
        brain injury, to be known as the ``National Traumatic Brain 
        Injury Surveillance System''.
    (b) Research.--The Secretary shall ensure that the National 
Traumatic Brain Injury Surveillance System is designed in a manner that 
facilitates further research on brain injury.
    (c) Content.--In carrying out subsection (a), the Secretary--
            (1) shall provide for the collection and storage of 
        information (excluding personally identifiable information) on 
        the incidence and prevalence of traumatic brain injury, 
        including concussion, in the United States across the lifespan;
            (2) to the extent practicable, shall provide for the 
        collection and storage of other available information 
        (excluding personally identifiable information) on traumatic 
        brain injury, such as information concerning demographics and 
        other information associated with the incidence of a traumatic 
        brain injury, such as--
                    (A) age;
                    (B) race and ethnicity;
                    (C) sex;
                    (D) geographic location;
                    (E) history of head injury (including injury type 
                and the approximate date of injury);
                    (F) pre-existing conditions, such as learning 
                disabilities and attention deficit hyperactivity 
                disorder; and
                    (G) co-occurring issues, such as substance abuse or 
                post-traumatic stress disorder;
            (3) to the extent practicable, shall provide for the 
        collection and storage of information relevant to analysis on 
        traumatic brain injury, such as information concerning--
                    (A) impact location on the body and nature of the 
                impact;
                    (B) qualifications of personnel making the 
                traumatic brain injury diagnosis;
                    (C) assessment tool used to make the diagnosis;
                    (D) signs and symptoms consistent with a head 
                injury;
                    (E) sport or activity and the level of competition 
                (if a sports-related activity);
                    (F) use of protective equipment and impact 
                monitoring devices; and
                    (G) severity of the traumatic brain injury; 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 health associations that--
                    (A) focus on brain injury; and
                    (B) have demonstrated experience in research, care, 
                or patient services;
            (3) State public health agencies;
            (4) health information technology experts or other 
        information management specialists;
            (5) clinicians with expertise in brain injury;
            (6) research scientists with experience conducting brain 
        research or utilizing surveillance systems for scientific 
        research purposes;
            (7) medical facilities of the Department of Veterans 
        Affairs; and
            (8) behavioral health centers.
    (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 Traumatic Brain Injury Surveillance System available, as 
appropriate, to Federal departments and agencies, such as the National 
Institutes of Health, the Health Resources and Services Administration, 
the Food and Drug Administration, the Centers for Medicare & Medicaid 
Services, the Agency for Healthcare Research and Quality, the 
Department of Education, 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 Traumatic Brain Injury 
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 Traumatic Brain Injury 
Surveillance System are at least as stringent as the privacy and 
security protections under HIPAA privacy and security law, including 
nondisclosure of personally identifiable information.
    (i) Report.--Not later than 2 years after the date of enactment of 
this Act, 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 
        Traumatic Brain Injury 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 traumatic brain injury.
    (j) Definition.--In this Act:
            (1) National health association.--The term ``national 
        health association'' means a national nonprofit organization 
        with chapters, other affiliated organizations, or networks in 
        States throughout the United States.
            (2) HIPAA privacy and security law.--The term ``HIPAA 
        privacy and security law'' has the meaning given to that term 
        in section 3009 of the Public Health Service Act (42 U.S.C. 
        300jj-19).
            (3) Personally identifiable information.--The term 
        ``personally identifiable information'' means information which 
        can be used to distinguish or trace an individual's identity 
        (such as their name, social security number, or biometric 
        records) either alone or when combined with other personal or 
        identifying information which is linked or linkable to a 
        specific individual (such as date of birth, place of birth, and 
        mother's maiden name).
            (4) Secretary.--The term ``Secretary'' means the Secretary 
        of Health and Human Services.
            (5) Surveillance.--The term ``surveillance'' means the 
        ongoing, systematic collection, analysis, interpretation, and 
        dissemination of data (other than personally identifiable 
        information) regarding a health-related event for use in public 
        health action to reduce morbidity and mortality and to improve 
        health.
            (6) Traumatic brain injury.--The term ``traumatic brain 
        injury'' means an injury to the head arising from blunt or 
        penetrating trauma or from acceleration or deceleration forces 
        associated with one or more of the following: decreased level 
        of consciousness, amnesia, objective neurologic or 
        neuropsychological abnormalities, skull fractures, diagnosed 
        intracranial lesions, or head injury listed as a cause of death 
        in the death certificate.
    (k) Authorization of Appropriations.--To carry out this Act, there 
are authorized to be appropriated such sums as may be necessary.
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