I 

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. 

1 Be it enacted by the Senate and House of Representa2 tives of the United States of America in Congress assembled, 

3 SECTION 1. SHORT TITLE. 

4 This Act may be cited as the ‘‘National Childhood 

5 Brain Tumor Prevention Network Act of 2009’’. 

6 SEC. 2. FINDINGS. 

7 Congress finds the following: 


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1 (1) Tumors kill more children than any other 

2 disease and brain tumors are the second most com3 mon type of cancer in children. 

4 (2) Childhood brain tumors are the leading 

5 cause of death from solid tumors in children. 

6 (3) There are newly recognized types of brain 

7 tumors, as defined by the World Health Organiza8 tion, and many of these newly recognized types 

9 occur in children. 

10 (4) The causes of the overwhelming majority of 

11 childhood brain tumors are unknown. 

12 (5) Brain tumors have substantial costs for af13 fected children, the families of such children, and so14 ciety. 

15 (6) Childhood brain tumors cause significant 

16 morbidity and the loss of many years of potential 

17 life. 

18 (7) The prognosis for most childhood brain tu19 mors is dismal and survivors face lasting adverse 

20 health effects. 

21 (8) Because of the relatively low overall inci22 dence of childhood brain tumors, such tumors fre23 quently do not receive sufficient attention and re24 search funding. 


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1 (9) No single institution has a sufficient num2 ber of patients to independently conduct research 

3 that will adequately address the causes of childhood 

4 brain tumors. 

5 (10) There has been no comprehensive study 

6 analyzing all relevant clinical, biological, and epide7 miological aspects of childhood brain tumors to iden8 tify potential risk factors and determine the cause of 

9 such tumors. 

10 (11) Existing national cooperative clinical on11 cology groups primarily investigate treatment op12 tions and prognosis and do not typically examine the 

13 origins of childhood brain tumors or the risk factors 

14 associated with such tumors. A significant majority 

15 of children with brain tumors are first treated by 

16 neurosurgeons and not by oncologists typically in17 volved in such groups. 

18 SEC. 3. SENSE OF CONGRESS. 

19 It is the sense of Congress that— 

20 (1) there is a need to establish a multi-center 

21 research effort based on collaboration between re22 gional consortia in order to comprehensively study 

23 the causes of childhood brain tumors and identify 

24 potential risk factors; 


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1 (2) there is a need to encourage a collaborative 

2 effort among surgical and medical centers with epi3 demiological study groups to gather comprehensive 

4 and detailed information for each child enrolled in 

5 those groups, in order to investigate environmental, 

6 nutritional, genetic, and developmental factors with 

7 respect to, and the pathological and epidemiological 

8 characteristics of, childhood brain tumors; and 

9 (3) there is a need to authorize the Director of 

10 the National Institutes of Health to coordinate na11 tional research efforts of governmental and non12 governmental entities with respect to childhood brain 

13 tumors. 

14 SEC. 4. ESTABLISHMENT OF THE NATIONAL CHILDHOOD 

15 BRAIN TUMOR PREVENTION NETWORK. 

16 (a) IN GENERAL.—Subpart 1 of part C of title IV 

17 of the Public Health Service Act (42 U.S.C. 285 et seq.) 

18 is amended by adding at the end the following: 

19 ‘‘SEC. 417G. NATIONAL CHILDHOOD BRAIN TUMOR PREVEN20 TION NETWORK. 

21 ‘‘(a) ESTABLISHMENT OF THE NATIONAL CHILD22 HOOD BRAIN TUMOR PREVENTION NETWORK.— 

23 ‘‘(1) IN GENERAL.—Not later than one year 

24 after the date of the enactment of this section, the 

25 Director of NIH, acting through the Director of the 


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1 National Cancer Institute, shall establish, admin2 ister, and coordinate a National Childhood Brain 

3 Tumor Prevention Network (hereinafter referred to 

4 in this section as the ‘Network’) for the purposes de5 scribed in paragraph (2). 

6 ‘‘(2) PURPOSES.—The purposes of the Network 

7 shall be the following: 

8 ‘‘(A) Providing grants of not fewer than 

9 five years duration to eligible consortia for the 

10 purpose of conducting research with respect to 

11 the causes of and risk factors associated with 

12 childhood brain tumors. 

13 ‘‘(B) Assembling a panel of experts, in14 cluding members of the Brain Tumor Epidemi15 ology Consortium and survivors of brain tu16 mors, to provide ongoing guidance and rec17 ommendations for, with respect to research 

18 funded by the Network, the development of the 

19 following: 

20 ‘‘(i) A common study design. 

21 ‘‘(ii) Standard protocols, methods, 

22 procedures, and assays for collecting from 

23 individuals enrolled as study participants, 

24 and the parents of such individuals, a min25 imum data set that includes the following: 


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1 ‘‘(I) Environmental exposure 

2 data. 

3 ‘‘(II) Nutritional data. 

4 ‘‘(III) Biospecimens, including 

5 genomic data. 

6 ‘‘(IV) Histopathological and mo7 lecular pathological data and speci8 mens. 

9 ‘‘(V) Clinical and radiological 

10 data. 

11 ‘‘(iii) Specific analytical methods for 

12 examining data. 

13 ‘‘(iv) Provisions for consensus review 

14 of enrolled cases. 

15 ‘‘(v) An integrated data collection net16 work. 

17 ‘‘(C) Designating a central laboratory to 

18 collect, analyze, and aggregate data with re19 spect to research funded by the Network and to 

20 make such data and analysis available to re21 searchers. 

22 ‘‘(3) ELIGIBLE CONSORTIA.—To be eligible for 

23 a grant under this section, a consortium shall dem24 onstrate the following: 


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1 ‘‘(A) The capability to annually enroll as 

2 research participants a minimum of 100 indi3 viduals with a newly diagnosed childhood brain 

4 tumor from the designated catchment area of 

5 such consortium. 

6 ‘‘(B) The capability to form a control 

7 group by enrolling as research participants, for 

8 each enrolled individual with a childhood brain 

9 tumor, at least two individuals without a child10 hood brain tumor, who are matched demo11 graphically to such enrolled individual with a 

12 childhood brain tumor. 

13 ‘‘(C) That the designated catchment area 

14 of such consortium does not overlap with the 

15 designated catchment area of a consortium al16 ready receiving a grant under this section. 

17 ‘‘(4) REPORT.—Not later than one year after 

18 the date of the enactment of this section and annu19 ally thereafter, the Director of NIH shall submit to 

20 Congress a report with respect to the Network, to be 

21 made publicly available, including a summary of re22 search funded by the Network and a list of consortia 

23 receiving grants under the Network. At the discre24 tion of the Director of NIH, such report may be 

25 combined with other similar or existing reports. 


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1 ‘‘(5) AUTHORIZATION OF APPROPRIATIONS.— 

2 ‘‘(A) IN GENERAL.—There is authorized to 

3 be appropriated $25,000,000 for each of fiscal 

4 years 2010 through 2014, to remain available 

5 until expended, to carry out this section. 

6 ‘‘(B) SENSE OF CONGRESS.—It is the 

7 sense of Congress that funds appropriated to 

8 carry out this section should be in addition to 

9 the funds already appropriated to carry out the 

10 functions of the National Institutes of Health. 

11 ‘‘(b) DEFINITIONS.—For purposes of this section, the 

12 following definitions apply: 

13 ‘‘(1) BRAIN TUMOR EPIDEMIOLOGY CONSOR14 TIUM.—The term ‘Brain Tumor Epidemiology Con15 sortium’ means the organization with such name 

16 formed in 2003 after an initial meeting sponsored by 

17 the National Cancer Institute’s Division of Cancer 

18 Epidemiology and Genetics. 

19 ‘‘(2) CATCHMENT AREA.—The term ‘catchment 

20 area’ means a defined area for which population 

21 data are available. 

22 ‘‘(3) CHILDHOOD BRAIN TUMOR.—The term 

23 ‘childhood brain tumor’ means an intracranial or 

24 spinal cord tumor occurring in an individual under 

25 20 years of age. 


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1 ‘‘(4) CONSORTIUM.—The term ‘consortium’ 

2 means a partnership of two or more universities, 

3 health care organizations, or government agencies, 

4 or any combination of such entities, serving a des5 ignated catchment area.’’. 

6 (b) TECHNICAL CORRECTION.— 

7 (1) IN GENERAL.—Section 3 of the 

8 Hematological Cancer Research Investment and 

9 Education Act of 2002 (Public Law 107–172; 116 

10 Stat. 541) is amended by striking ‘‘419C’’ and in11 serting ‘‘417C’’. 

12 (2) EFFECTIVE DATE.—The amendment made 

13 by paragraph (1) shall take effect as if included in 

14 the enactment of the Act referred to in such para15 graph. 

Æ 


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