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Statement On Introduced Bill (Senate - October 09, 1998)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:
105th CONGRESS
2d Session
S. 2605
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.
_______________________________________________________________________
IN THE SENATE OF THE UNITED STATES
October 9 (legislative day, October 2), 1998
Mr. Torricelli (for himself and Mr. Lautenberg) introduced the
following bill; which was read twice and referred to the Committee on
Labor and Human Resources
_______________________________________________________________________
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.
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:
"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.".
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