113 S2746 IS: Sudden Unexpected Death Data Enhancement and Awareness Act
U.S. Senate
2014-07-31
text/xml
EN
Pursuant to Title 17 Section 105 of the United States Code, this file is not subject to copyright protection and is in the public domain.
1.
This Act may be cited as the Sudden Unexpected Death Data Enhancement and Awareness Act
.
2.
Stillbirth and sudden deaths in the young
The Public Health Service Act is amended by inserting after section 317L of such Act (42 U.S.C.
247b–13) the following:
317L–1.
Stillbirth and sudden deaths in the young
(a)
The Secretary, acting through the Director of the Centers for Disease Control and Prevention, shall
continue to carry out activities of the Centers relating to stillbirth,
including the following:
(1)
(A)
The Secretary shall provide for surveillance efforts to collect thorough, complete, and
high-quality epidemiologic information on stillbirths, including through
the utilization of existing surveillance systems (including the National
Vital Statistics System (NVSS) and other appropriately equipped birth
defects surveillance programs).
(B)
Standard protocol for surveillance
The Secretary, in consultation with qualified individuals and organizations determined appropriate
by the Secretary, to include representatives of health and advocacy
organizations, State and local governments, public health officials, and
health researchers, shall—
(i)
provide for the continued development and dissemination of a standard protocol for stillbirth data
collection and surveillance; and
(ii)
not less than every 5 years, review and, as appropriate, update such protocol.
(2)
Postmortem data collection and evaluation
The Secretary, in consultation with qualified individuals and organizations determined appropriate
by the Secretary, to include representatives of health professional
organizations, shall—
(A)
upon the enactment of this section, and not less than every 5 years thereafter, review existing
guidelines for increasing and improving the quality and completeness of
postmortem stillbirth evaluation and related data collection, including
conducting and reimbursing autopsies, placental histopathology, and
cytogenetic testing; and
(B)
develop strategies for implementing such guidelines and addressing any barriers to implementation
of such guidelines.
(b)
Sudden unexpected infant death activities
The Secretary, acting through the Director of the Centers for Disease Control and Prevention, shall
continue to carry out activities of the Centers relating to sudden
unexpected infant death (SUID), including the following:
(1)
(A)
The Secretary shall provide for surveillance efforts to gather sociodemographic, death scene
investigation, clinical history, and autopsy information on SUID cases
through the review of existing records on SUID, including through the
utilization of existing surveillance systems (including the national child
death review case reporting system and SUID case registries).
(B)
Standard protocol for surveillance
The Secretary, in consultation with qualified individuals and organizations determined appropriate
by the Secretary, to include representatives of health and advocacy
organizations, State and local governments, and public health officials,
shall—
(i)
provide for the continued development and dissemination of a standard protocol for SUID data
reporting and surveillance; and
(ii)
not less than every 5 years, review and, as appropriate, update such protocol.
(C)
Goals for enhancing surveillance
In carrying out activities under this subsection, the Secretary shall seek to accomplish the
following goals:
(i)
Collecting thorough, complete, and high-quality death scene investigation data, clinical history,
and autopsy findings.
(ii)
Collecting standardized information about the environmental and medical circumstances of death
(including the sleep environment and quality of the death scene
investigation).
(iii)
Supporting multidisciplinary infant death reviews, such as those performed by child death review
committees, to collect and review the information and classify and
characterize SUID using a standardized classification system.
(iv)
Facilitating the sharing of information to improve the public reporting of surveillance and vital
statistics describing the epidemiology of SUID.
(2)
Standard protocol for death scene investigation
(A)
The Secretary, in consultation with forensic pathologists, medical examiners, coroners, medicolegal
death scene investigators, law enforcement personnel, emergency medical
technicians and paramedics, public health agencies, and other individuals
and organizations determined appropriate by the Secretary, shall—
(i)
provide for the continued dissemination of a standard death scene investigation protocol; and
(ii)
not less than every 5 years, review and, as appropriate, update such protocol.
(B)
Content of Death Scene Protocol
The protocol disseminated under subparagraph (A) shall include information on—
(i)
the current and past medical history of the infant;
(ii)
family medical history;
(iii)
the circumstances surrounding the death, including any suspicious circumstances;
(iv)
the sleep position and sleep environment of the infant; and
(v)
any accidental or environmental factors associated with death.
(3)
Guidelines for a standard autopsy protocol
The Secretary, in consultation with the Attorney General of the United States, forensic
pathologists, medical examiners, coroners, pediatric pathologists,
pediatric cardiologists, pediatric neuropathologists, geneticists,
infectious disease specialists, and other individuals and organizations
determined appropriate by the Secretary, shall—
(A)
develop guidelines for a standard autopsy protocol for SUID; and
(B)
not less than every 5 years, review and, as appropriate, update such guidelines.
(4)
The Secretary, in consultation with the Attorney General of the United States, may—
(A)
conduct or support—
(i)
training activities for medical examiners, coroners, medicolegal death scene investigators, law
enforcement personnel, and emergency medical technicians or paramedics
concerning death scene investigations for SUID, including the use of
standard death scene investigation protocols disseminated under paragraph
(2); and
(ii)
training activities for medical examiners, coroners, and forensic pathologists concerning standard
autopsy protocols for SUID developed under paragraph (3); and
(B)
make recommendations to health professional organizations regarding the integration of protocols
disseminated or developed under this subsection, and training conducted or
supported under this paragraph, into existing training and continuing
education programs.
(c)
Sudden unexplained death in childhood activities
The Secretary, acting through the Director of the Centers for Disease Control and Prevention, shall
continue to carry out activities of the Centers relating to sudden
unexpected death in childhood (SUDC), including the following:
(1)
The Secretary, in consultation with the Director of the National Institutes of Health, shall
provide for surveillance efforts to gather sociodemographic, death scene
investigation, clinical history, and autopsy information on SUDC cases
through the review of existing records on SUDC, including through the
utilization of existing surveillance systems (including the Sudden Death
in the Young Registry).
(2)
Guidelines for a standard autopsy protocol
The Secretary, in consultation with the Attorney General of the United States, forensic
pathologists, medical examiners, coroners, pediatric pathologists,
pediatric cardiologists, pediatric neuropathologists, geneticists,
infectious disease specialists, and other individuals and organizations
determined appropriate by the Secretary, may—
(A)
develop guidelines for a standard autopsy protocol for SUDC; and
(B)
not less than every 5 years, review and, as appropriate, update such guidelines.
(3)
Review of applicability of programs and activities
Not later than 18 months after the date of enactment of this section, the Secretary, acting through
the Director of the Centers for Disease Control and Prevention, and in
consultation with the Director of the National Institutes of Health, shall
complete an evaluation of the possibility of carrying out or intensifying,
with respect to SUDC, the types of programs and activities that are
authorized to be carried out under subsection (b) with respect to SUID.
(d)
Not later than 2 years after the date of enactment of this Act, the Secretary, acting through the
Director of the Centers for Disease Control and Prevention, shall submit
to the Congress a report on the implementation of this section. Such
report shall include—
(1)
the results of the evaluation under subsection (c)(3); and
(2)
a description of any activities that—
(A)
are being carried out by the Centers for Disease Control and Prevention in consultation with the
National Institutes of Health relating to stillbirth, SUID, or SUDC; and
(B)
are in addition to the activities being carried out pursuant to this section.
(e)
In this section:
(1)
The term stillbirth
means a spontaneous fetal death that—
(A)
occurs at 20 or more weeks gestation; or
(B)
if the age of the fetus is not known, involves a fetus weighing 350 grams or more.
(2)
The terms sudden unexpected infant death
and SUID
mean the death of an infant less than 1 year of age—
(A)
which occurs suddenly and unexpectedly; and
(B)
whose cause—
(i)
is not immediately obvious prior to investigation; and
(ii)
is either explained upon investigation or remains unexplained.
(3)
The terms sudden unexplained death in childhood
and SUDC
mean the sudden death of a child 1 year of age or older which remains unexplained after a thorough
case investigation that includes—
(A)
a review of the clinical history and circumstances of death; and
(B)
performance of a complete autopsy with appropriate ancillary testing.
(f)
This section shall not be construed to increase the amount of appropriations that are authorized to
be appropriated for any fiscal year.
.