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113th Congress                                                   Report
                        HOUSE OF REPRESENTATIVES
 2d Session                                                     113-557

======================================================================



 
       SUDDEN UNEXPECTED DEATH DATA ENHANCEMENT AND AWARENESS ACT

                                _______
                                

 July 24, 2014.--Committed to the Committee of the Whole House on the 
              State of the Union and ordered to be printed

                                _______
                                

         Mr. Upton, from the Committee on Energy and Commerce, 
                        submitted the following

                              R E P O R T

                        [To accompany H.R. 669]

      [Including cost estimate of the Congressional Budget Office]

    The Committee on Energy and Commerce, to whom was referred 
the bill (H.R. 669) to amend the Public Health Service Act to 
improve the health of children and help better understand and 
enhance awareness about unexpected sudden death in early life, 
having considered the same, report favorably thereon with an 
amendment and recommend that the bill as amended do pass.

                                CONTENTS

                                                                   Page
Purpose and Summary..............................................     4
Background and Need for Legislation..............................     4
Hearings.........................................................     5
Committee Consideration..........................................     5
Committee Votes..................................................     5
Committee Oversight Findings.....................................     5
Statement of General Performance Goals and Objectives............     5
New Budget Authority, Entitlement Authority, and Tax Expenditures     6
Earmark, Limited Tax Benefits, and Limited Tariff Benefits.......     6
Committee Cost Estimate..........................................     6
Congressional Budget Office Estimate.............................     6
Federal Mandates Statement.......................................     7
Duplication of Federal Programs..................................     7
Disclosure of Directed Rule Makings..............................     7
Advisory Committee Statement.....................................     7
Applicability to Legislative Branch..............................     7
Section-by-Section Analysis of the Legislation...................     8
Changes in Existing Law Made by the Bill, as Reported............     8

    The amendment is as follows:
  Strike all after the enacting clause and insert the 
following:

SECTION 1. SHORT TITLE.

  This Act may be cited as the ``Sudden Unexpected Death Data 
Enhancement and Awareness Act''.

SEC. 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:

``SEC. 317L-1. STILLBIRTH AND SUDDEN DEATHS IN THE YOUNG.

  ``(a) Stillbirth 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 stillbirth, 
including the following:
          ``(1) Surveillance.--
                  ``(A) In general.--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) Surveillance.--
                  ``(A) In general.--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) In general.--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
                  ``(C) not less than every 5 years, review and, as 
                appropriate, update such guidelines.
          ``(4) Training.--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) Surveillance.--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) Report to Congress.--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) Definitions.--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) Funding.--This section shall not be construed to increase the 
amount of appropriations that are authorized to be appropriated for any 
fiscal year.''.

                          Purpose and Summary

    H.R. 669, the ``Sudden Unexpected Death Data Enhancement 
and Awareness Act,'' was introduced on February 13, 2013, by 
Rep. Pallone (D-NJ) and King (R-NY) to improve the health of 
children and better understand unexpected sudden death in early 
life.

                  Background and Need for Legislation

    Fetal death or stillbirth occurs after 20 weeks of 
pregnancy in about 1 in 160 pregnancies. Causes of stillbirth 
vary from birth defects to umbilical accidents. Risk factors 
include maternal age, maternal obesity, and ancestry.\1\
---------------------------------------------------------------------------
    \1\http://www.marchofdimes.com/loss/stillbirth.aspx.
---------------------------------------------------------------------------
    Sudden unexpected infant death (SUID) occurs in infants 
less than 1 year of age. There are about 4,000 infants that die 
of SUID each year, often with no known cause. Sudden Infant 
Death Syndrome (SIDS) accounts for half of the SUID cases. The 
overall rate of SIDS has declined more than 50 percent since 
1990, but rates for certain minority groups remain 
disproportionately higher than the rest of the population.\2\
---------------------------------------------------------------------------
    \2\http://www.cdc.gov/sids/aboutsuidandsids.htm.
---------------------------------------------------------------------------
    Sudden Unexplained Death in Children (SUDC) occurs in 
children over the age of 12 months, and it often remains 
unexplained, even after a thorough investigation. SUDC is rare, 
with an incidence of 1.2 deaths per 100,000 children. Since its 
cause is unknown, more study is needed to identify prevention 
strategies.\3\
---------------------------------------------------------------------------
    \3\http://www.sudc.org/Advocacy/MediaEducation/FactSheet.aspx.
---------------------------------------------------------------------------
    Prevention of stillbirth, SUID, and SUDC depends on the 
collection of data related to the biological, social, and 
environmental factors associated with these outcomes. The 
Centers for Disease Control and Prevention (CDC) collects data 
on stillbirth (fetal death), SUID, and SUDC through its 
existing surveillance systems in order to identify the extent 
of the problem and risk factors. Since State reporting 
procedures vary, the ability of the CDC to collect national 
data related to stillbirth, SUID, and SUDC has been 
hampered.\4\
---------------------------------------------------------------------------
    \4\http://www.cdc.gov/sids/suidabout.htm.
---------------------------------------------------------------------------
    H.R. 669 would authorize activities at the CDC to help 
improve the understanding of stillbirth, SUID, and SUDC by 
improving data collection, increasing surveillance strategies, 
and setting guidelines and protocols for death scene 
investigations and autopsies.

                                Hearings

    On Wednesday, November 20, 2013, the Subcommittee on Health 
held a hearing on H.R. 669. The Subcommittee received testimony 
from:
            Marsha Ford, President, American 
        Association of Poison Control Centers;
            Edward McCabe, Office of Medicine and 
        Health Promotion, March of Dimes Foundation;
            Laura Crandall, Co-Founder, Sudden 
        Unexplained Death Program at the CJ Foundation for 
        SIDS;
            Robert Mt. Joy, CEO, Cornerstone Care Inc.;
            Drew Nagele, Board of Directors, Brain 
        Injury Association of America;
            Pat Smith, President, Lyme Disease 
        Association, Inc.; and,
            Steven J. Stack, Board of Trustees, 
        American Medical Association.

                        Committee Consideration

    On June 19, 2014, the Subcommittee on Health met in open 
markup session and forwarded H.R. 669 to the full Committee, as 
amended, by a voice vote. On July 15, 2014, the Committee on 
Energy and Commerce met in open markup session and ordered H.R. 
669 to be reported to the House, as amended, by a voice vote.

                            Committee Votes

    Clause 3(b) of rule XIII of the Rules of the House of 
Representatives requires the Committee to list the record votes 
on the motion to report legislation and amendments thereto. 
There were no record votes taken in connection with ordering 
H.R. 669 reported. A motion by Mr. Upton to order H.R. 669 
reported to the House, as amended, was agreed to by a voice 
vote

                      Committee Oversight Findings

    Pursuant to clause 3(c)(1) of rule XIII of the Rules of the 
House of Representatives, the Committee held a hearing and made 
findings that are reflected in this report.

         Statement of General Performance Goals and Objectives

    Pursuant to clause 3(c)(1) of rule XIII of the House of 
Representatives, the goal of H.R. 669 is to help improve the 
understanding of stillbirth, SUID, and SUDC by improving data 
collection, increasing surveillance strategies, and setting 
guidelines and protocols for death scene investigations and 
autopsies.

   New Budget Authority, Entitlement Authority, and Tax Expenditures

    In compliance with clause 3(c)(2) of rule XIII of the Rules 
of the House of Representatives, the Committee finds that H.R. 
669, would result in no new or increased budget authority, 
entitlement authority, or tax expenditures or revenues.

       Earmark, Limited Tax Benefits, and Limited Tariff Benefits

    In compliance with clause 9(e), 9(f), and 9(g) of rule XXI 
of the Rules of the House of Representatives, the Committee 
finds that H.R. 669 contains no earmarks, limited tax benefits, 
or limited tariff benefits.

                        Committee Cost Estimate

    The Committee adopts as its own the cost estimate prepared 
by the Director of the Congressional Budget Office pursuant to 
section 402 of the Congressional Budget Act of 1974.

                  Congressional Budget Office Estimate

    Pursuant to clause 3(c)(3) of rule XIII of the Rules of the 
House of Representatives, the following is the cost estimate 
provided by the Congressional Budget Office pursuant to section 
402 of the Congressional Budget Act of 1974:

                                     U.S. Congress,
                               Congressional Budget Office,
                                     Washington, DC, July 23, 2014.
Hon. Fred Upton,
Chairman, Committee on Energy and Commerce,
House of Representatives, Washington, DC.
    Dear Mr. Chairman: The Congressional Budget Office has 
prepared the enclosed cost estimate for H.R. 669, the Sudden 
Unexpected Death Data Enhancement and Awareness Act.
    If you wish further details on this estimate, we will be 
pleased to provide them. The CBO staff contact is Santiago 
Vallinas.
            Sincerely,
                                              Douglas W. Elmendorf.
    Enclosure.

H.R. 669--Sudden Unexpected Death Data Enhancement and Awareness Act

    H.R. 669 would require the Secretary of Health and Human 
Services (HHS), acting through the Centers for Disease Control 
and Prevention (CDC), to continue to carry out certain 
activities relating to sudden unexpected death in the young.
    The legislation would direct the Secretary of HHS to:
            Support surveillance efforts relating to 
        stillbirths and sudden unexpected death in children, 
        including the development of standard protocols for 
        data collection;
            Promote standard protocols for the 
        investigation of death scenes; and
            Review and update guidelines for post-
        mortem data collection and for certain types of autopsy 
        examinations.
    The CDC currently supports such activities; thus, CBO 
estimates that requiring those same activities under H.R. 669 
would have no incremental cost to the federal government.
    The bill would also require the Secretary to submit a 
report to the Congress on activities relating to stillbirth and 
sudden deaths in the young. CBO expects that the costs of 
producing that report would be negligible.
    CBO estimates that implementing H.R. 669 would not have a 
significant effect on federal spending. The bill would not 
affect direct spending or revenues; therefore, pay-as-you-go 
procedures do not apply.
    H.R. 669 contains no intergovernmental or private-sector 
mandates as defined in the Unfunded Mandates Reform Act and 
would impose no costs on state, local, or tribal governments.
    The CBO staff contacts for this estimate are Santiago 
Vallinas and Stephanie Cameron. This estimate was approved by 
Holly Harvey, Deputy Assistant Director for Budget Analysis.

                       Federal Mandates Statement

    The Committee adopts as its own the estimate of Federal 
mandates prepared by the Director of the Congressional Budget 
Office pursuant to section 423 of the Unfunded Mandates Reform 
Act.

                    Duplication of Federal Programs

    No provision of H.R. 669 establishes or reauthorizes a 
program of the Federal Government known to be duplicative of 
another Federal program, a program that was included in any 
report from the Government Accountability Office to Congress 
pursuant to section 21 of Public Law 111-139, or a program 
related to a program identified in the most recent Catalog of 
Federal Domestic Assistance.

                  Disclosure of Directed Rule Makings

    The Committee estimates that enacting H.R. 669 would not 
specifically direct a rulemaking within the meaning of 5 U.S.C. 
551.

                      Advisory Committee Statement

    No advisory committees within the meaning of section 5(b) 
of the Federal Advisory Committee Act were created by this 
legislation.

                  Applicability to Legislative Branch

    The Committee finds that the legislation does not relate to 
the terms and conditions of employment or access to public 
services or accommodations within the meaning of section 
102(b)(3) of the Congressional Accountability Act.

             Section-by-Section Analysis of the Legislation


Section 1. Short title

    Section 1 states the legislation may be cited as the 
``Sudden Unexpected Death Data Enhancement and Awareness Act''.

Section 2. Stillbirth and sudden deaths in the young

    Section 2 would authorize the continuation of data 
collection activities related to stillbirth, including the 
development and dissemination of a standard protocol for 
surveillance and a review of existing guidelines for postmortem 
stillbirth evaluation.
    The section would allow the continuation of activities 
related to SUID, including surveillance of various events and 
records, such as a death scene investigation. A standard 
protocol for surveillance and death scene investigations 
related to SUID also would be developed. Guidelines for a 
standard autopsy protocol would be developed in consultation 
with Attorney General.
    In addition, the section would allow the continuation of 
activities related to SUDC including surveillance.
    Finally, the section would provide for a review of SUID 
programs and a report to Congress on the implementation of the 
activities in this section.

         Changes in Existing Law Made by the Bill, as Reported

  In compliance with clause 3(e) of rule XIII of the Rules of 
the House of Representatives, changes in existing law made by 
the bill, as reported, are shown as follows (new matter is 
printed in italic and existing law in which no change is 
proposed is shown in roman):

SECTION 317L-1 OF THE PUBLIC HEALTH SERVICE ACT

           *       *       *       *       *       *       *



SEC. 317L-1. STILLBIRTH AND SUDDEN DEATHS IN THE YOUNG.

  (a) Stillbirth 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 stillbirth, including the following:
          (1) Surveillance.--
                  (A) In general.--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) Surveillance.--
                  (A) In general.--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) In general.--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
                  (C) not less than every 5 years, review and, 
                as appropriate, update such guidelines.
          (4) Training.--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) Surveillance.--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) Report to Congress.--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) Definitions.--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) Funding.--This section shall not be construed to increase 
the amount of appropriations that are authorized to be 
appropriated for any fiscal year.