I 

112TH CONGRESS 

1ST SESSION H. R. 1970 

To amend 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 

MAY 24, 2011 

Ms. LEE of California (for herself and Mr. BISHOP of Utah) introduced the 

following bill; which was referred to the Committee on Energy and Commerce 

A BILL 

To amend 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’’. 

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 and coordinate 

21 a multi-center research effort based on collaboration 

22 between regional consortia and governmental and 

23 nongovernmental entities in order to comprehen24 sively study the causes of childhood brain tumors 

25 and identify potential risk factors; and 


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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. 

9 SEC. 4. ESTABLISHMENT OF THE NATIONAL CHILDHOOD 

10 BRAIN TUMOR PREVENTION NETWORK. 

11 Title III of the Public Health Service Act is amended 

12 by inserting after section 317T of such Act (42 U.S.C. 

13 247b–22) the following: 

14 ‘‘SEC. 317U. NATIONAL CHILDHOOD BRAIN TUMOR PREVEN15 TION NETWORK. 

16 ‘‘(a) ESTABLISHMENT OF THE NATIONAL CHILD17 HOOD BRAIN TUMOR PREVENTION NETWORK.— 

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

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

20 Secretary, acting through the Director of the Cen21 ters for Disease Control and Prevention, shall estab22 lish, administer, and coordinate within the National 

23 Center for Environmental Health a National Child24 hood Brain Tumor Prevention Network (hereinafter 


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1 referred to in this section as the ‘Network’) for the 

2 purposes described in paragraph (2). 

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

4 shall be the following: 

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

6 five years duration to eligible consortia for the 

7 purpose of conducting research with respect to 

8 the causes of and risk factors associated with 

9 childhood brain tumors. 

10 ‘‘(B) Assembling a panel of experts, in11 cluding members of the Brain Tumor Epidemi12 ology Consortium and survivors of brain tu13 mors, to provide ongoing guidance and rec14 ommendations for, with respect to research 

15 funded by the Network, the development of the 

16 following: 

17 ‘‘(i) A common study design. 

18 ‘‘(ii) Standard protocols, methods, 

19 procedures, and assays for collecting from 

20 individuals enrolled as study participants, 

21 and the parents of such individuals, a min22 imum data set that includes the following: 

23 ‘‘(I) Environmental exposure 

24 data. 

25 ‘‘(II) Nutritional data. 


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1 ‘‘(III) Biospecimens, including 

2 genomic data. 

3 ‘‘(IV) Histopathological and mo4 lecular pathological data and speci5 mens. 

6 ‘‘(V) Clinical and radiological 

7 data. 

8 ‘‘(iii) Specific analytical methods for 

9 examining data. 

10 ‘‘(iv) Provisions for consensus review 

11 of enrolled cases. 

12 ‘‘(v) An integrated data collection net13 work. 

14 ‘‘(C) Designating a central laboratory to 

15 collect, analyze, and aggregate data with re16 spect to research funded by the Network and to 

17 make such data and analysis available to re18 searchers. 

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

20 a grant under this section, a consortium shall dem21 onstrate the following: 

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

23 research participants a minimum of 100 indi24 viduals with a newly diagnosed childhood brain 


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1 tumor from the designated catchment area of 

2 such consortium. 

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

4 group by enrolling as research participants, for 

5 each enrolled individual with a childhood brain 

6 tumor, at least two individuals without a child7 hood brain tumor, who are matched demo8 graphically to such enrolled individual with a 

9 childhood brain tumor. 

10 ‘‘(C) That the designated catchment area 

11 of such consortium does not overlap with the 

12 designated catchment area of a consortium al13 ready receiving a grant under this section. 

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

15 the date of the enactment of this section and annu16 ally thereafter, the Secretary, acting through the Di17 rector of the Centers for Disease Control and Pre18 vention, shall submit to Congress a report with re19 spect to the Network, to be made publicly available, 

20 including a summary of research funded by the Net21 work and a list of consortia receiving grants under 

22 the Network. At the discretion of the Secretary, 

23 such report may be combined with other similar or 

24 existing reports. 

25 ‘‘(5) AUTHORIZATION OF APPROPRIATIONS.— 


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

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

3 years 2012 through 2016, to remain available 

4 until expended, to carry out this section. 

5 ‘‘(B) SENSE OF CONGRESS.—It is the 

6 sense of Congress that funds appropriated to 

7 carry out this section should be in addition to 

8 funds otherwise available or appropriated to 

9 carry out the activities described in this section. 

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

11 following definitions apply: 

12 ‘‘(1) BRAIN TUMOR EPIDEMIOLOGY CONSOR13 TIUM.—The term ‘Brain Tumor Epidemiology Con14 sortium’ means the organization with such name 

15 formed in 2003 after an initial meeting sponsored by 

16 the National Cancer Institute’s Division of Cancer 

17 Epidemiology and Genetics. 

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

19 area’ means a defined area for which population 

20 data are available. 

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

22 ‘childhood brain tumor’ means an intracranial or 

23 spinal cord tumor occurring in an individual under 

24 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.’’. 

Æ 


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