(1) Tumors kill more children than any other 
disease and brain tumors are the second most com-
mon 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 Organiza-
tion, 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 af-
fected children, the families of such children, and so-
ciety. 
(6) Childhood brain tumors cause significant 
morbidity and the loss of many years of potential 
life. 
(7) The prognosis for most childhood brain tu-
mors is dismal and survivors face lasting adverse 
health effects. 
(8) Because of the relatively low overall inci-
dence of childhood brain tumors, such tumors fre-
quently do not receive sufficient attention and re-
search funding. 
VerDate Nov 24 2008 
04:45 Jan 23, 2009
Jkt 079200
PO 00000
Frm 00002
Fmt 6652
Sfmt 6201
E:\BILLS\H653.IH
H653
jbell on PROD1PC69 with BILLS
(9) No single institution has a sufficient num-
ber 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 epide-
miological aspects of childhood brain tumors to iden-
tify potential risk factors and determine the cause of 
such tumors. 
(11) Existing national cooperative clinical on-
cology groups primarily investigate treatment op-
tions 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 in-
volved 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 re-
gional consortia in order to comprehensively study 
the causes of childhood brain tumors and identify 
potential risk factors; 
VerDate Nov 24 2008 
04:45 Jan 23, 2009
Jkt 079200
PO 00000
Frm 00003
Fmt 6652
Sfmt 6201
E:\BILLS\H653.IH
H653
jbell on PROD1PC69 with BILLS
(2) there is a need to encourage a collaborative 
effort among surgical and medical centers with epi-
demiological 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 na-
tional research efforts of governmental and non-
governmental 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 PREVEN-
TION NETWORK. 
‘‘(a) ESTABLISHMENT OF THE NATIONAL CHILD-
HOOD 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 
VerDate Nov 24 2008 
04:45 Jan 23, 2009
Jkt 079200
PO 00000
Frm 00004
Fmt 6652
Sfmt 6201
E:\BILLS\H653.IH
H653
jbell on PROD1PC69 with BILLS
National Cancer Institute, shall establish, admin-
ister, and coordinate a National Childhood Brain 
Tumor Prevention Network (hereinafter referred to 
in this section as the ‘Network’) for the purposes de-
scribed 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, in-
cluding members of the Brain Tumor Epidemi-
ology Consortium and survivors of brain tu-
mors, to provide ongoing guidance and rec-
ommendations 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 min-
imum data set that includes the following: 
VerDate Nov 24 2008 
04:45 Jan 23, 2009
Jkt 079200
PO 00000
Frm 00005
Fmt 6652
Sfmt 6201
E:\BILLS\H653.IH
H653
jbell on PROD1PC69 with BILLS
‘‘(I) 
Environmental 
exposure 
data. 
‘‘(II) Nutritional data. 
‘‘(III) Biospecimens, including 
genomic data. 
‘‘(IV) Histopathological and mo-
lecular pathological data and speci-
mens. 
‘‘(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 net-
work. 
‘‘(C) Designating a central laboratory to 
collect, analyze, and aggregate data with re-
spect to research funded by the Network and to 
make such data and analysis available to re-
searchers. 
‘‘(3) ELIGIBLE CONSORTIA.—To be eligible for 
a grant under this section, a consortium shall dem-
onstrate the following: 
VerDate Nov 24 2008 
04:45 Jan 23, 2009
Jkt 079200
PO 00000
Frm 00006
Fmt 6652
Sfmt 6201
E:\BILLS\H653.IH
H653
jbell on PROD1PC69 with BILLS
‘‘(A) The capability to annually enroll as 
research participants a minimum of 100 indi-
viduals 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 child-
hood brain tumor, who are matched demo-
graphically 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 al-
ready receiving a grant under this section. 
‘‘(4) REPORT.—Not later than one year after 
the date of the enactment of this section and annu-
ally 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 re-
search funded by the Network and a list of consortia 
receiving grants under the Network. At the discre-
tion of the Director of NIH, such report may be 
combined with other similar or existing reports. 
VerDate Nov 24 2008 
04:45 Jan 23, 2009
Jkt 079200
PO 00000
Frm 00007
Fmt 6652
Sfmt 6201
E:\BILLS\H653.IH
H653
jbell on PROD1PC69 with BILLS
‘‘(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
CONSOR-
TIUM.—The term ‘Brain Tumor Epidemiology Con-
sortium’ 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. 
VerDate Nov 24 2008 
04:45 Jan 23, 2009
Jkt 079200
PO 00000
Frm 00008
Fmt 6652
Sfmt 6201
E:\BILLS\H653.IH
H653
jbell on PROD1PC69 with BILLS
‘‘(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 des-
ignated catchment area.’’. 
(b) TECHNICAL CORRECTION.— 
(1) 
IN
GENERAL.—Section 
of 
the 
Hematological Cancer Research Investment and 
Education Act of 2002 (Public Law 107–172; 116 
Stat. 541) is amended by striking ‘‘419C’’ and in-
serting ‘‘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 para-
graph. 
Æ 
VerDate Nov 24 2008 
04:45 Jan 23, 2009
Jkt 079200
PO 00000
Frm 00009
Fmt 6652
Sfmt 6301
E:\BILLS\H653.IH
H653
jbell on PROD1PC69 with BILLS