[Congressional Bills 111th Congress]
[From the U.S. Government Publishing Office]
[H.R. 653 Introduced in House (IH)]

111th CONGRESS
  1st Session
                                H. R. 653

To amend title IV of the Public Health Service Act to create a National 
    Childhood Brain Tumor Prevention Network to provide grants and 
  coordinate research with respect to the causes of and risk factors 
    associated with childhood brain tumors, and for other purposes.


_______________________________________________________________________


                    IN THE HOUSE OF REPRESENTATIVES

                            January 22, 2009

Ms. Lee of California introduced the following bill; which was referred 
                to the Committee on Energy and Commerce

_______________________________________________________________________

                                 A BILL


 
To amend title IV of the Public Health Service Act to create a National 
    Childhood Brain Tumor Prevention Network to provide grants and 
  coordinate research with respect to the causes of and risk factors 
    associated with childhood brain tumors, and for other purposes.

    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 ``National Childhood Brain Tumor 
Prevention Network Act of 2009''.

SEC. 2. FINDINGS.

    Congress finds the following:
            (1) Tumors kill more children than any other disease and 
        brain tumors are the second most common type of cancer in 
        children.
            (2) Childhood brain tumors are the leading cause of death 
        from solid tumors in children.
            (3) There are newly recognized types of brain tumors, as 
        defined by the World Health Organization, and many of these 
        newly recognized types occur in children.
            (4) The causes of the overwhelming majority of childhood 
        brain tumors are unknown.
            (5) Brain tumors have substantial costs for affected 
        children, the families of such children, and society.
            (6) Childhood brain tumors cause significant morbidity and 
        the loss of many years of potential life.
            (7) The prognosis for most childhood brain tumors is dismal 
        and survivors face lasting adverse health effects.
            (8) Because of the relatively low overall incidence of 
        childhood brain tumors, such tumors frequently do not receive 
        sufficient attention and research funding.
            (9) No single institution has a sufficient number of 
        patients to independently conduct research that will adequately 
        address the causes of childhood brain tumors.
            (10) There has been no comprehensive study analyzing all 
        relevant clinical, biological, and epidemiological aspects of 
        childhood brain tumors to identify potential risk factors and 
        determine the cause of such tumors.
            (11) Existing national cooperative clinical oncology groups 
        primarily investigate treatment options and prognosis and do 
        not typically examine the origins of childhood brain tumors or 
        the risk factors associated with such tumors. A significant 
        majority of children with brain tumors are first treated by 
        neurosurgeons and not by oncologists typically involved in such 
        groups.

SEC. 3. SENSE OF CONGRESS.

    It is the sense of Congress that--
            (1) there is a need to establish a multi-center research 
        effort based on collaboration between regional consortia in 
        order to comprehensively study the causes of childhood brain 
        tumors and identify potential risk factors;
            (2) there is a need to encourage a collaborative effort 
        among surgical and medical centers with epidemiological study 
        groups to gather comprehensive and detailed information for 
        each child enrolled in those groups, in order to investigate 
        environmental, nutritional, genetic, and developmental factors 
        with respect to, and the pathological and epidemiological 
        characteristics of, childhood brain tumors; and
            (3) there is a need to authorize the Director of the 
        National Institutes of Health to coordinate national research 
        efforts of governmental and nongovernmental entities with 
        respect to childhood brain tumors.

SEC. 4. ESTABLISHMENT OF THE NATIONAL CHILDHOOD BRAIN TUMOR PREVENTION 
              NETWORK.

    (a) In General.--Subpart 1 of part C of title IV of the Public 
Health Service Act (42 U.S.C. 285 et seq.) is amended by adding at the 
end the following:

``SEC. 417G. NATIONAL CHILDHOOD BRAIN TUMOR PREVENTION NETWORK.

    ``(a) Establishment of the National Childhood Brain Tumor 
Prevention Network.--
            ``(1) In general.--Not later than one year after the date 
        of the enactment of this section, the Director of NIH, acting 
        through the Director of the National Cancer Institute, shall 
        establish, administer, and coordinate a National Childhood 
        Brain Tumor Prevention Network (hereinafter referred to in this 
        section as the `Network') for the purposes described in 
        paragraph (2).
            ``(2) Purposes.--The purposes of the Network shall be the 
        following:
                    ``(A) Providing grants of not fewer than five years 
                duration to eligible consortia for the purpose of 
                conducting research with respect to the causes of and 
                risk factors associated with childhood brain tumors.
                    ``(B) Assembling a panel of experts, including 
                members of the Brain Tumor Epidemiology Consortium and 
                survivors of brain tumors, to provide ongoing guidance 
                and recommendations for, with respect to research 
                funded by the Network, the development of the 
                following:
                            ``(i) A common study design.
                            ``(ii) Standard protocols, methods, 
                        procedures, and assays for collecting from 
                        individuals enrolled as study participants, and 
                        the parents of such individuals, a minimum data 
                        set that includes the following:
                                    ``(I) Environmental exposure data.
                                    ``(II) Nutritional data.
                                    ``(III) Biospecimens, including 
                                genomic data.
                                    ``(IV) Histopathological and 
                                molecular pathological data and 
                                specimens.
                                    ``(V) Clinical and radiological 
                                data.
                            ``(iii) Specific analytical methods for 
                        examining data.
                            ``(iv) Provisions for consensus review of 
                        enrolled cases.
                            ``(v) An integrated data collection 
                        network.
                    ``(C) Designating a central laboratory to collect, 
                analyze, and aggregate data with respect to research 
                funded by the Network and to make such data and 
                analysis available to researchers.
            ``(3) Eligible consortia.--To be eligible for a grant under 
        this section, a consortium shall demonstrate the following:
                    ``(A) The capability to annually enroll as research 
                participants a minimum of 100 individuals with a newly 
                diagnosed childhood brain tumor from the designated 
                catchment area of such consortium.
                    ``(B) The capability to form a control group by 
                enrolling as research participants, for each enrolled 
                individual with a childhood brain tumor, at least two 
                individuals without a childhood brain tumor, who are 
                matched demographically to such enrolled individual 
                with a childhood brain tumor.
                    ``(C) That the designated catchment area of such 
                consortium does not overlap with the designated 
                catchment area of a consortium already receiving a 
                grant under this section.
            ``(4) Report.--Not later than one year after the date of 
        the enactment of this section and annually thereafter, the 
        Director of NIH shall submit to Congress a report with respect 
        to the Network, to be made publicly available, including a 
        summary of research funded by the Network and a list of 
        consortia receiving grants under the Network. At the discretion 
        of the Director of NIH, such report may be combined with other 
        similar or existing reports.
            ``(5) Authorization of appropriations.--
                    ``(A) In general.--There is authorized to be 
                appropriated $25,000,000 for each of fiscal years 2010 
                through 2014, to remain available until expended, to 
                carry out this section.
                    ``(B) Sense of congress.--It is the sense of 
                Congress that funds appropriated to carry out this 
                section should be in addition to the funds already 
                appropriated to carry out the functions of the National 
                Institutes of Health.
    ``(b) Definitions.--For purposes of this section, the following 
definitions apply:
            ``(1) Brain tumor epidemiology consortium.--The term `Brain 
        Tumor Epidemiology Consortium' means the organization with such 
        name formed in 2003 after an initial meeting sponsored by the 
        National Cancer Institute's Division of Cancer Epidemiology and 
        Genetics.
            ``(2) Catchment area.--The term `catchment area' means a 
        defined area for which population data are available.
            ``(3) Childhood brain tumor.--The term `childhood brain 
        tumor' means an intracranial or spinal cord tumor occurring in 
        an individual under 20 years of age.
            ``(4) Consortium.--The term `consortium' means a 
        partnership of two or more universities, health care 
        organizations, or government agencies, or any combination of 
        such entities, serving a designated catchment area.''.
    (b) Technical Correction.--
            (1) In general.--Section 3 of the Hematological Cancer 
        Research Investment and Education Act of 2002 (Public Law 107-
        172; 116 Stat. 541) is amended by striking ``419C'' and 
        inserting ``417C''.
            (2) Effective date.--The amendment made by paragraph (1) 
        shall take effect as if included in the enactment of the Act 
        referred to in such paragraph.
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