Traumatic Brain Injury and Spinal Cord Injury Registry Act

Summary: Traumatic Brain Injury and Spinal Cord Injury Registry Act - Amends the Public Health Service Act to authorize grants to:  (1) States or their designees to operate the State's traumatic brain injury and spinal cord injury registry; and (2) academic institutions to conduct applied research to support the registries.  Regulates registry data confidentiality.  Authorizes technical assistance, directly or through grants and contracts, regarding the registries and regarding development of model legislation.  Authorizes appropriations.

SECTION 1. SHORT TITLE.

    This Act may be cited as the ``Traumatic Brain Injury and Spinal 
Cord Injury Registry Act''.

SEC. 2. FINDINGS.

    Congress finds that--
            (1) traumatic brain and spinal cord injury are severe and 
        disabling, have enormous personal and societal costs;
            (2) 51,000 people die each year from traumatic brain injury 
        and 4,500,000 people live with lifelong and severe disability 
        as a result of a traumatic brain injury;
            (3) approximately 10,000 people sustain spinal cord 
        injuries each year, and 200,000 live with life-long and severe 
        disability; and
            (4) a nationwide system of registries will help better 
        define--
                    (A) who sustains such injuries and the impact of 
                such injuries;
                    (B) the range of impairments and disability 
                associated with such injuries; and
                    (C) better mechanisms to refer persons with 
                traumatic brain injuries or spinal cord injuries to 
                available services.

SEC. 3. TRAUMATIC BRAIN INJURY AND SPINAL CORD INJURY REGISTRIES 
              PROGRAM.

    Title III of the Public Health Service Act (42 U.S.C. 241 et seq.) 
is amended by adding at the end the following:

 ``Part O--National Program for Traumatic Brain Injury and Spinal Cord 
                           Injury Registries

``SEC. 399N. NATIONAL PROGRAM FOR TRAUMATIC BRAIN INJURY AND SPINAL 
              CORD INJURY REGISTRIES.

    ``(a) In General.--The Secretary, acting through the Director of 
the Centers for Disease Control and Prevention, may make grants to 
States or their designees to operate the State's traumatic brain injury 
and spinal cord injury registry, and to academic institutions to 
conduct applied research that will support the development of such 
registries, to collect data concerning--
            ``(1) demographic information about each traumatic brain 
        injury or spinal cord injury;
            ``(2) information about the circumstances surrounding the 
        injury event associated with each traumatic brain injury and 
        spinal cord injury;
            ``(3) administrative information about the source of the 
        collected information, dates of hospitalization and treatment, 
        and the date of injury;
            ``(4) information characterizing the clinical aspects of 
        the traumatic brain injury or spinal cord injury, including the 
        severity of the injury, the types of treatments received, and 
        the types of services utilized;
            ``(5) information on the outcomes associated with traumatic 
        brain injuries and spinal cord injuries, such as impairments, 
        functional limitations, and disability;
            ``(6) information on the outcomes associated with traumatic 
        brain injuries and spinal cord injuries which do not result in 
        hospitalization; and
            ``(7) other elements determined appropriate by the 
        Secretary.
    ``(b) Eligibility for Grants.--
            ``(1) In general.--No grant shall be made by the Secretary 
        under subsection (a) unless an application has been submitted 
        to, and approved by, the Secretary. Such application shall be 
        in such form, submitted in such a manner, and be accompanied by 
        such information, as the Secretary may specify. No such 
        application may be approved unless it contains assurances that 
        the applicant will use the funds provided only for the purposes 
        specified in the approved application and in accordance with 
        the requirements of subsection (a), that the application will 
        establish such fiscal control and fund accounting procedures as 
        may be necessary to assure proper disbursement and accounting 
        of Federal funds paid to the applicant under subsection (a) of 
        this section, and that the applicant will comply with review 
        requirements under sections 491 and 492.
            ``(2) Establishment of registries.--Each applicant, prior 
        to receiving Federal funds under subsection (a), shall provide 
        for the establishment of a registry that will--
                    ``(A) comply with appropriate standards of 
                completeness, timeliness, and quality of data 
                collection;
                    ``(B) provide for periodic reports of traumatic 
                brain injury and spinal cord injury registry data; and
                    ``(C) provide for the authorization under State law 
                of the statewide traumatic brain injury and spinal cord 
                injury registry, including promulgation of regulations 
                providing--
                            ``(i) a means to assure timely and complete 
                        reporting of brain injuries and spinal cord 
                        injuries (as described in subsection (a)) to 
                        the statewide traumatic brain injury and spinal 
cord injury registry by hospitals or other facilities providing 
diagnostic or acute care or rehabilitative social services to patients 
with respect to traumatic brain injury and spinal cord injury;
                            ``(ii) a means to assure the complete 
                        reporting of brain injuries and spinal cord 
                        injuries (as defined in subsection (a)) to the 
                        statewide traumatic brain injury and spinal 
                        cord injury registry by physicians, surgeons, 
                        and all other health care practitioners 
                        diagnosing or providing treatment for traumatic 
                        brain injury and spinal cord injury patients, 
                        except for cases directly referred to or 
                        previously admitted to a hospital or other 
                        facility providing diagnostic or acute care or 
                        rehabilitative services to patients in that 
                        State and reported by those facilities;
                            ``(iii) a means for the statewide traumatic 
                        brain injury and spinal cord injury registry to 
                        access all records of physicians and surgeons, 
                        hospitals, outpatient clinics, nursing homes, 
                        and all other facilities, individuals, or 
                        agencies providing such services to patients 
                        which would identify cases of traumatic brain 
                        injury or spinal cord injury or would establish 
                        characteristics of the injury, treatment of the 
                        injury, or medical status of any identified 
                        patient; and
                            ``(iv) for the reporting of traumatic brain 
                        injury and spinal cord injury case data to the 
                        statewide traumatic brain injury and spinal 
                        cord injury registry in such a format, with 
                        such data elements, and in accordance with such 
                        standards of quality timeliness and 
                        completeness, as may be established by the 
                        Secretary.
            ``(3) Applied research.--Applicants for applied research 
        shall conduct applied research as determined by the Secretary, 
        acting through the Director of the Centers for Disease Control 
        and Prevention, to be necessary to support the development of 
        registry activities as defined in this section.
            ``(4) Assurances for confidentiality of registry data.--
        Each applicant shall provide to the satisfaction of the 
        Secretary for--
                    ``(A) a means by which confidential case data may 
                in accordance with State law be disclosed to traumatic 
                brain injury and spinal cord injury researchers for the 
                purposes of the prevention, control and research of 
                brain injuries and spinal cord injuries;
                    ``(B) the authorization or the conduct, by the 
                statewide traumatic brain injury and spinal cord injury 
                registry or other persons and organizations, of studies 
                utilizing statewide traumatic brain injury and spinal 
                cord injury registry data, including studies of the 
                sources and causes of traumatic brain injury and spinal 
                cord injury, evaluations of the cost, quality, 
                efficacy, and appropriateness of diagnostic, 
                rehabilitative, and preventative services and programs 
                relating to traumatic brain injury and spinal cord 
                injury, and any other clinical, epidemiological, or 
                other traumatic brain injury and spinal cord injury 
                research;
                    ``(C) the protection of individuals complying with 
                the law, including provisions specifying that no person 
                shall be held liable in any civil action with respect 
                to a traumatic brain injury and spinal cord injury case 
                report provided to the statewide traumatic brain injury 
                and spinal cord injury registry, or with respect to 
                access to traumatic brain injury and spinal cord injury 
                case information provided to the statewide traumatic 
                brain injury and spinal cord injury registry; and
                    ``(D) the protection of individual privacy and 
                confidentiality consistent with Federal and State laws.

``SEC. 399O. TECHNICAL ASSISTANCE IN OPERATIONS OF STATEWIDE 
              REGISTRIES.

    ``The Secretary, acting through the Director of the Centers for 
Disease Control and Prevention, may, directly or through grants and 
contracts, or both, provide technical assistance to the States in the 
establishment and operation of statewide registries, including 
assistance in the development of model legislation for statewide 
traumatic brain injury and spinal cord injury registries and assistance 
in establishing a computerized reporting and data processing system. In 
providing such assistance, the Secretary shall encourage States to 
utilize standardized procedures where appropriate.

``SEC. 399P. AUTHORIZATION OF APPROPRIATIONS.

    ``For the purpose of carrying out this part, there are authorized 
to be appropriated $10,000,000 for fiscal year 1999, and such sums as 
may be necessary for each of the fiscal years 2000 through 2004.

``SEC. 399Q. DEFINITIONS.

    ``In this part:
            ``(1) Spinal cord injury.--The term `spinal cord injury' 
        means an acquired injury to the spinal cord. Such term does not 
        include spinal cord dysfunction caused by congenital or 
        degenerative disorders, vascular disease, or tumors, or spinal 
        column fractures without a spinal cord injury.
            ``(2) Traumatic brain injury.--The term `traumatic brain 
        injury' means an acquired injury to the brain, including brain 
        injuries caused by anoxia due to near-drowning. Such term does 
        not include brain dysfunction caused by congenital or 
        degenerative disorders, cerebral vascular disease, tumors, or 
        birth trauma. The Secretary may revise the definition of such 
        term as the Secretary determines appropriate.''.