I
105TH CONGRESS
2D SESSION
H. R. 4800
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 HOUSE OF REPRESENTATIVES
OCTOBER 10, 1998
Mr. PASCRELL (for himself and Mr. GREENWOOD) introduced the following
bill; which was referred to the Committee on Commerce
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 Representa-
tives of the United States of America in Congress assembled,
SECTION 1. SHORT TITLE.
This Act may be cited as the ‘‘Traumatic Brain In-
jury 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 im-
pact of such injuries;
(B) the range of impairments and disabil-
ity associated with such injuries; and
(C) better mechanisms to refer persons
with traumatic brain injuries or spinal cord in-
juries to available services.
SEC. 3. TRAUMATIC BRAIN INJURY AND SPINAL CORD IN-
JURY 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 follow-
ing:
the injury, treatment of the injury, or med-
ical 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 in-
jury 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 es-
tablished by the Secretary.
‘‘(3) APPLIED RESEARCH.—Applicants for ap-
plied research shall conduct applied research as de-
termined by the Secretary, acting through the Direc-
tor of the Centers for Disease Control and Preven-
tion, 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 dis-
closed to traumatic brain injury and spinal cord
injury researchers for the purposes of the pre-
vention, 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 orga-
nizations, of studies utilizing statewide trau-
matic brain injury and spinal cord injury reg-
istry data, including studies of the sources and
causes of traumatic brain injury and spinal
cord injury, evaluations of the cost, quality, ef-
ficacy, and appropriateness of diagnostic, reha-
bilitative, and preventative services and pro-
grams relating to traumatic brain injury and
spinal cord injury, and any other clinical, epide-
miological, or other traumatic brain injury and
spinal cord injury research;
‘‘(C) the protection of individuals comply-
ing 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 trau-
matic brain injury and spinal cord injury reg-
istry; 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 develop-
ment of model legislation for statewide traumatic brain in-
jury and spinal cord injury registries and assistance in es-
tablishing 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 dys-
function caused by congenital or degenerative dis-
orders, 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 degenera-
tive disorders, cerebral vascular disease, tumors, or
birth trauma. The Secretary may revise the defini-
tion of such term as the Secretary determines appro-
priate.’’.
Æ