[Congressional Record Volume 144, Number 141 (Friday, October 9, 1998)]
[Senate]
[Pages S12172-S12173]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]

      By Mr. TORRICELLI (for himself and Mr. Lautenberg):
  S. 2605. A bill to amend the Public Health Service Act to provide for 
the establishment of a national program of traumatic brain injury and 
spinal cord injury registries; to the Committee on Labor and Human 
Resources.


          Traumatic Brain and Spinal Cord Injury Registry Act

 Mr. TORRICELLI. Mr. President, I introduce legislation that 
represents an important step forward in our national strategy for 
addressing traumatic brain injury (TBI) and spinal cord injury (SCI). 
Tragically, these injuries have enormous personal and economic costs on 
victims, their families, and our nation as a whole.
  Today, an estimated 4.5 million Americans live with a disability as a 
result of a TBI. Each year, more than two million people suffer a TBI, 
10,000 of whom live in my State of New Jersey. More than 200,000 
Americans live with a SCI, with 10,000 new injuries reported each year. 
Collectively, TBI and SCI costs the U.S. more than $35 billion per 
year.
  These statistics, however, reveal only a fraction of the problem. In 
the U.S., we have no standardized system of collecting information on 
these injuries. Instead, we rely on the work of a few limited State 
programs and private organizations who often lack the resources to 
collect complete, timely, and accurate data.
  Mr. President, the legislation I introduce today, the TBI/SCI 
Registry Act, will allow the Centers for Disease Control and Prevention 
(CDC) to make grants available to states to establish their own TBI/SCI 
registries. The CDC and state departments of health will then work as 
partners in establishing and maintaining comprehensive tracking systems 
that ensures patient privacy.
  The important information that state registries will be responsible 
for collecting will include: circumstances of injury and demographics 
of patients; length of stay in hospital and treatments used; severity 
of the injury; outcomes of treatments and services.
  The benefits will be far-reaching because the collection of accurate 
data will help identify high-risk populations for future prevention 
programs and will help link patients to effective treatments and social 
services. Perhaps most important, the information from these registries 
will help advocates and legislators justify TBI/SCI as a greater 
funding priority.
  The National Institutes of Health (NIH) currently spends 
approximately $60 million for SCI and $52 million for TBI. This 
research has contributed to tremendous progress, but we must improve 
our ability to identify innovative research projects and increase our 
financial commitment to those efforts.
  Mr. President, this legislation will ultimately help achieve this 
goal by creating a foundation for a unified scientific and public 
health approach for preventing, treating, and someday finding a cure 
for TBI/SCI. I am proud that my bill has already received the 
endorsement of the Christopher Reeve Foundation, the American Paralysis 
Association, the Brain Injury Association, and the Eastern Paralyzed 
Veterans Association.
  Mr. President, I ask that the text of the bill be printed in the 
Record.
  There being no objection, the bill was ordered to be printed in the 
Record, as follows:

                                S. 2605

       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 ``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:

[[Page S12173]]

 ``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.''.
                                 ______