,,ii ,cal5d> ,no4 #cdb #aae? ,,congress 
#b;d ,session  ,s4 #bib  ,,9 ,,! ,,s5ate
 ,,( ,,! ,,unit$ ,,/ates  ,febru>y #b1  
#bjag,mr4 ,re$ 7= himself1 ,mrs4        
,capito1 ,mr4 ,van ,holl51 ,mr4         
,isakson1 ,mr4 ,blunt1 ,mrs4 ,%ahe51    
,mr4 ,rubio1 ,mrs4 ,gillibr&1 ,mr4      
,book]1 ,ms4 ,coll9s1 ,mr4 ,k+1 ,mr4    
,coons1 ,mr4 ,p]due1 ,mr4 ,grassley1    
,ms4 ,/ab5[1 ,mr4 ,k5n$y1 ,mr4          
,:iteh\se1 ,mr4 ,cassidy1 ,mr4          
,blum5?al1 ,mr4 ,"y1 ,mr4 ,casey1 ,mr4  
,man*91 ,mrs4 ,ern/1 ,mr4 ,nelson1 ,mr4 
,portman1 ,mrs4 ,fis*]1 ,mr4 ,frank51   
,mr4 ,br[n1 ,mr4 ,hat*1 ,mr4 ,pet]s1    
,ms4 ,murk[ski1 ,ms4 ,duckwor?1 ,mr4    
,m>key1 ,mr4 ,hell]1 ,ms4 ,klobu*>1 ,mr4
 ,wick]1 ,mr4 ,m]kley1 ,mr4 ,donnelly1  
,mrs4 ,fe9/e91 ,mr4 ,s*um]1 ,mr4 ,b5net1
 ,mr4 ,leahy1 ,mr4 ,ka9e1 ,ms4 ,smi?1   
,mr4 ,tillis1 ,ms4 ,cortez ,ma/o1 ,mr4  
,s&]s1 ,mr4 ,c>d91 & ,ms4 ,baldw97      
introduc$ ! foll[+ bill2 :i* 0 read     
twice & ref]r$ to ! ,committee on       
,heal?1 ,education1 ,labor1 & ,p5sions  

,m>* #ab1 #bjah,report$ by ,mr4 ,alex&]1
 ) an amendment,strike out all aft] !   
enact+ clause & ins]t ! "p pr9t$ 9      
italic  ,a ,,bill  ,to maximize         
discov]y1 & accel]ate developm5t &      
availability1 ( promis+ *ildhood canc]  
treatm5ts1 & = o!r purposes4  #a4 ,%ort 
title2 table ( cont5ts  7a7 ,%ort title 
,?is ,act may be cit$ z ! ,*ildhood     
,canc] ,survivor%ip1 ,treatm5t1 ,access1
 & ,rese>* ,act ( #bjag or ! ,*ildhood  
,canc] ,,/> ,act4  7b7 ,table ( cont5ts 
,! table ( cont5ts = ?is ,act is z      
foll[s3 ,sec4 #a4 ,%ort title2 table (  
cont5ts4,sec4 #b4 ,f9d+s4,title         
,i--,,maximiz+ ,,rese>* ,,?r\gh         
,d,i,s,c,o,v,e,r,y,subtitle ,a--,c>ol9e 
,pryce ,walk] ,conqu] ,*ildhood ,canc]  
,reau?orization ,act,sec4 #aja4         
,*ildr5's canc] biorepositories &       
biospecim5 rese>*4,sec4 #ajb4 ,improv+  
,*ildhood ,canc] ,surveillance4,subtitle
 ,b--,p$iatric ,exp]tise at ,n,i,h,sec4 
#aaa4 ,inclusion ( at lea/ "o p$iatric  
oncologi/ on ! ,national ,canc]         

,advisory ,bo>d4,sec4 #aab4 ,s5se (     
,congress reg>d+ p$iatric exp]tise at ! 
,national ,canc] ,in/itute4,subtitle    
,c--,,nih ,report on ,*ildhood ,canc]   
,activities,sec4 #aba4 ,report+ on      
*ildhood canc] rese>* projects4,title   
,,ii--,,maximiz+ ,,deliv]y3 ,,c>e1      
,,quality ,,( ,,life1 ,,survivor%ip1 ,,&
 ,,c>egiv] ,s,u,p,p,o,r,t,subtitle      
,a--,*ildhood ,canc] ,survivors'        
,quality ( ,life ,act,sec4 #bja4 ,canc] 
survivor%ip programs4,sec4 #bjb4 ,grants
 to improve c>e = p$iatric canc]        
survivors4,sec4 #bjc4 ,compreh5sive     
long-t]m foll[-up s]vices = p$iatric    
canc] survivors4,sec4 #bjd4 ,survivor%ip
 demon/ration project4,subtitle         
,b--,cov]age & ,paym5t ( ,high ,quality 
,care,sec4 #baa4 ,report by !           
,comptroll] ,g5]al4  #b4 ,f9d+s         
,congress makes ! foll[+ f9d+s3 7#a7    
,ea* ye> 9 ! ,unit$ ,/ates !re are an   
e/imat$ #ae1ghj *ildr5 betwe5 bir? & !  
age ( #ai diagnos$ ) canc]4             
,approximately #a 9 #bhe *ildr5 9 !     

,unit$ ,/ates w be diagnos$ ) canc] be=e
 _! #bj? bir?day4  7#b7 ,9 #aifj1 only  
#d p]c5t ( *ildr5 ) canc] surviv$ m ?an 
#e ye>s1 b today1 cure rates h increas$ 
to ov] #hj p]c5t = *ildr5 & adolesc5ts  
"u age #bj4  7#c7 ,:ile ! cure rates =  
"s *ildhood canc]s are n[ ov] #hj p]c5t1
 ! survival rates = _m types ( canc]s 9 
*ildr5 rema9 extremely l[4  7#d7        
,accord+ to ! ,c5t]s = ,disease ,control
 & ,prev5tion1 canc] cont9ues to be !   
lead+ cause ( dea? by disease 9 *ildr5 &
 adolesc5ts "u ! age ( #ad4  7#e7 ,by   
#bjbj1 ! population ( *ildhood canc]s   
survivors is expect$ to be #ejj1jjj     
individuals4  7#f7 ,z _m z two-?irds (  
*ildhood canc] survivors are likely to  
exp]i5ce at lea/ "o late effect (       
treatm5t1 ) z _m z "o-f\r? exp]i5c+ a   
late effect t is s]i\s or life-?reat5+4 
,common late effects ( *ildhood canc]   
are neurocognitive1 psy*ological1       
c>diopulmon>y1 endocr9e1 &              
musculoskeletal effects1 second>y       
malignancies1 & e>ly dea?4  7#g7 ,z a   

result ( disp>ities 9 ! deliv]y ( canc] 
c>e1 m9ority1 l[-income1 & o!r m$ically 
und]s]v$ *ildr5 are m likely to be      
diagnos$ ) late /age disease1 exp]i5ce  
poor] treatm5t outcomes1 h %ort]        
survival "t ) less quality ( life1 &    
exp]i5ce a sub/antially great]          
likelihood ( canc] dea?4  7#h7          
,collection ( biospecim5s1 along )      
cl9ical & outcome data1 on *ildr5 &     
adolesc5ts ) canc] 9 ! ,unit$ ,/ates is 
necess>y to improve *ildhood & adolesc5t
 canc] treatm5ts & cures4 ,curr5tly     
biospecim5s1 & cl9ical & outcome data1  
are collect$ = less ?an half ( *ildr5 9 
! ,unit$ ,/ates ) canc]4  7#i7 ,! late  
effects ( canc] treatm5t may *ange z    
!rapies evolve1 :i* means t ! monitor+ &
 c>e ( canc] survivors may ne$ to be    
modifi$ on a r\t9e basis4  7#aj7        
,despite ! int5se /ress caus$ by        
*ildhood canc]1 !re is a lack ( /&>diz$ 
& coord9at$ psy*osocial c>e = ! *ildr5 &
 _! families1 f ! date ( diagnosis ?r\gh
 treatm5t & survivor%ip4  7#aa7 ,!      

,national ,academy ( ,m$ic9e1 9 its     
report on canc] survivor%ip entitl$     
,*ildhood ,canc] ,survivor%ip3 ,improv+ 
,c>e & ,quality ( ,life1 /ates t an     
organiz$ sy/em ( c>e & a me?od ( c>e =  
p$iatric canc] survivors is ne$$4  7#ab7
 ,focus$ & well-design$ rese>* & pilot  
heal? deliv]y programs c answ] que/ions 
ab\t ! optimal ways to provide heal?    
c>e1 foll[-up monitor+ s]vices1 &       
survivor%ip c>e to ^? diagnos$ )        
*ildhood canc] & contribute to          
improvem5ts 9 ! quality ( c>e & quality 
( life ( ^? individuals ?r\gh adul?ood4 
7#ac7 ,! ,national ,in/itutes ( ,heal?1 
includ+ ! ,national ,canc] ,in/itute1   
inve/ approximately half ( _! annual    
appropriations to support basic rese>* t
 s]ves z ! f\ndation = translational &  
cl9ical rese>* = all diseases &         
conditions1 ) ! pot5tial to lead to     
break?r\ghs = *ildr5 ) canc]4 ,virtually
 all progress aga9/ canc]--9 bo? *ildr5 
& adults--has be5 f\nd$ 9 basic rese>*1 
(t5 9 areas n directly relat$ to !      

disease4  7#ad7 ,! ,national ,canc]     
,in/itute supports a numb] ( key rese>* 
programs specifically to advance        
*ildhood canc] c>e1 includ+ precision   
m$ic9e cl9ical trials = *ildr5 ) canc]1 
! ,*ildr5's ,oncology ,gr\p 7"p ( !     
,national ,cl9ical ,trials ,network ( ! 
,national ,canc] ,in/itute71 ! ,p$iatric
 ,precl9ical ,te/+ ,consortium1 !       
,p$iatric ,bra9 ,tumor ,consortium1 !   
,*ildhood ,canc] ,survivor ,/udy1 !     
,!rapeutically ,applicable ,rese>* to   
,g5]ate ,effective ,treatm5ts program & 
relat$ p$iatric canc] g5omics rese>*    
7includ+ ! ,p$iatric ,,mat* ,precision  
,m$ic9e trial71 & ! ,p$iatric ,oncology 
,bran* 7"p ( ! intramural program ( !   
,national ,canc] ,in/itute1 ^: mission  
is to develop new treatm5ts = p$iatric  
canc]74  ,i ,,maximiz+ ,,rese>* ,,?r\gh 
,,discov]y  ,a ,c>ol9e ,pryce ,walk]    
,conqu] ,*ildhood ,canc] ,reau?orization
 ,act  #aja4 ,*ildr5's canc]            
biorepositories & biospecim5 rese>*     
,section #dag;,e ( ! ,public ,heal?     

,s]vice ,act 7#db ,u4,s4,c4 #bhe;a-#aa7 
is am5d$-- 7#a7 by /rik+ subsection 7a7 
& ins]t+ ! foll[+3  7a7 ,*ildr5's canc] 
biorepositories  7#a7 ,aw>d ,!          
,secret>y1 act+ ?r\gh ! ,director (     
,,nih1 may make aw>ds to an entity or   
entities describ$ 9 p>agraph 7#d7 to    
build ^u exi/+ initiatives to collect   
biospecim5s & cl9ical & demographic     
in=mation ) a goal ( collection = ! va/ 
majority ( all *ildr51 adolesc5ts1 & "y 
adults ) select$ canc] subtypes 7& _!   
recurr5ces7 = :i* curr5t treatm5ts are  
lea/ effective1 ?r\gh "o or m biospecim5
 rese>* ef=ts design$ to a*ieve a bett] 
und]/&+ ( ! cause ( su* canc]s 7& _!    
recurr5ces7 & ! effects ( treatm5ts =   
su* canc]s4  7#b7 ,use ( funds ,am\nts  
receiv$ "u an aw>d "u p>agraph 7#a7 may 
be us$ to c>ry out ! foll[+3 7,a7       
,acquire1 pres]ve1 & /ore high-quality1 
donat$ biospecim5s & associat$ cl9ical &
 demographic in=mation on *ildr51       
adolesc5ts1 & "y adults diagnos$ ) canc]
 9 ! ,unit$ ,/ates1 focus+ on *ildr5 &  

adolesc5ts enroll$ 9 cl9ical trials =   
:om curr5t treatm5ts are lea/ effective4
 ,activities "u ?is subp>agraph may     
include /orage ( biospecim5s & associat$
 cl9ical & demographic data at          
biorepositories support$ by ! ,national 
,canc] ,in/itute1 su* z ! ,*ildr5's     
,oncology ,gr\p ,biorepository & !      
,p$iatric ,coop]ative ,human ,tissue    
,network z well z ?r\gh biorepositories 
e/abli%$ z appropriate to support !     
sci5tific ne$s ( future rese>* ef=ts4   
7,b7 ,make su* in=mation publicly       
available1 includ+ ! repositories       
describ$ 9 subp>agraph 7,a74  7,c7      
,ma9ta9 a secure se>*able database on   
/or$ biospecim5s & associat$ cl9ical &  
demographic data f *ildr51 adolesc5ts1 &
 "y adults ) canc] = ! conduct ( rese>* 
by sci5ti/s & qualifi$ heal? c>e        
pr(essionals4  7,d7 ,e/abli% proc$ures =
 evaluat+ applications = access to su*  
biospecim5s & cl9ical & demographic data
 f rese>*]s & o!r qualifi$ heal? c>e    
pr(essionals4  7,e7 ,make available &   

di/ribute biospecim5s & cl9ical &       
demographic data f *ildr51 adolesc5ts1 &
 "y adults ) canc] to rese>*]s &        
qualifi$ heal? c>e pr(essionals =       
pe]-review$ rese>* at a m9imal co/4     
7#c7 ,no requirem5t ,no *ild1 adolesc5t1
 or "y adult ) canc] %all be requir$ "u 
?is subsection to contribute a specim5  
to a biorepository or %>e cl9ical or    
demographic data4  7#d7 ,application2   
consid]ations  7,a7 ,application ,to be 
eligible to receive an aw>d "u p>agraph 
7#a7 an entity %all submit an           
application to ! ,secret>y at su* a "t1 
9 su* mann]1 & conta9+ su* in=mation z !
 ,secret>y may reasonably require4  7,b7
 ,consid]ations ,9 evaluat+ !           
applications 9 subp>agraph 7,a71 !      
,secret>y %all consid] ! exi/+          
infra/ructure ( ! entity t w\ld all[ = !
 timely capture ( biospecim5s & relat$  
cl9ical & demographic in=mation =       
*ildr51 adolesc5ts1 & "y adults ) canc]4
  7#e7 ,privacy protections2 cons5t     
7,a7 ,9 g5]al ,! ,secret>y may n make an

 aw>d "u p>agraph 7#a7 to an entity     
unless ! ,secret>y ensures t su*        
entity--  7i7 collects biospecim5s &    
associat$ cl9ical & demographic         
in=mation f *ildr5 & adolesc5ts )       
appropriate p]mission f p>5ts or legal  
gu>dians 9 accordance ) ,f$]al & ,/ate  
law2 &  7ii7 adh]es to /rict            
confid5tiality to protect ! id5tity &   
privacy ( pati5ts 9 accordance ) ,f$]al 
& ,/ate law4  7,b7 ,cons5t ,! ,secret>y 
%all e/abli% an appropriate process =   
a*iev+ cons5t f ! pati5t1 p>5t1 or legal
 gu>dian4  7#f7 ,s+le po9t ( access2    
/&>d data2 guidel9es & ov]sight  7,a7   
,s+le po9t ( access ,! ,secret>y %all   
ensure t ea* biorepository support$ "u  
p>agraph 7#a7 has electronically        
se>*able data = use by rese>*]s & o!r   
qualifi$ heal? c>e pr(essionals 9 !     
mann] & to ! ext5t def9$ by ! ,secret>y4
  7,b7 ,/&>d data ,! ,secret>y %all     
require all recipi5ts ( an aw>d "u      
p>agraph 7#a7 to make available a /&>d  
dataset = ! purposes ( subp>agraph 7,a7 

9 a /&>d electronic =mat t enables      
rese>*]s & qualifi$ heal? c>e           
pr(essionals to se>*4  7,c7 ,guidel9es &
 ov]sight ,! ,secret>y %all develop &   
dissem9ate appropriate guidel9es = !    
developm5t & ma9t5ance ( !              
biorepositories support$ "u ?is         
subsection1 includ+ appropriate         
ov]sight4  7#g7 ,coord9ation ,!         
,secret>y %all ensure t cl9ical &       
demographic in=mation collect$ 9        
accordance ) ?is subsection is collect$ 
9 coord9ation ) ! in=mation collect$ "u 
section #cii;,e-#a4  7#h7 ,prohibition  
on use ( funds ,funds made available to 
c>ry out ?is subsection %all n be us$ to
 acquire1 pres]ve1 or ma9ta9 a          
biospecim5 collect$ f a pati5t if su*   
activity is already cov]$ by funds      
available f ! ,national ,canc] ,in/itute
 = su* purpose4  7#i7 ,report ,n lat]   
?an #d ye>s aft] ! date ( enactm5t ( !  
,*ildhood ,canc] ,survivor%ip1          
,treatm5t1 ,access1 & ,rese>* ,act (    
#bjag1 ! ,secret>y %all submit to       

,congress a report on-- 7,a7 ! numb] (  
biospecim5s & correspond+ cl9ical       
demographic data collect$ ?r\gh !       
biospecim5 rese>* ef=ts support$ "u     
p>agraph 7#a72  7,b7 ! numb] (          
biospecim5s & correspond+ cl9ical       
demographic data reque/$ = use by       
rese>*]s2  7,c7 any b>ri]s to !         
collection ( biospecim5s & correspond+  
cl9ical demographic data2  7,d7 any     
b>ri]s exp]i5c$ by rese>*]s or heal? c>e
 pr(essionals 9 access+ ! biospecim5s & 
correspond+ cl9ical demographic data    
necess>y = use 9 rese>*2 &  7,e7 any    
recomm5dations ) respect to improv+ !   
biospecim5 & biorepository rese>* ef=ts 
"u ?is subsection4  7#aj7 ,def9itions ,=
 purposes ( ?is subsection3 7,a7 ,aw>d  
,! t]m aw>d includes a grant1 contract1 
coop]ative agreem5t1 or o!r transaction 
det]m9$ by ! ,secret>y4  7,b7           
,biospecim5 ,! t]m biospecim5 includes--
 7i7 solid tumor tissue or bone m>r[2   
7ii7 normal or control tissue2  7iii7   
blood & plasma2  7iv7 ,,dna & ,,rna     

extractions2  7v7 familial ,,dna2 &     
7vi7 any o!r sample requir$ by !        
,secret>y4  7,c7 ,cl9ical & demographic 
in=mation ,! t]m cl9ical & demographic  
in=mation includes--  7i7 date (        
diagnosis2  7ii7 age at diagnosis2      
7iii7 ! pati5t's g5d]1 race1 e?nicity1 &
 environm5tal exposures2  7iv7 ext5t (  
disease at enrollm5t2  7v7 site (       
meta/ases2  7vi7 location ( prim>y tumor
 cod$2  7vii7 hi/ologic diagnosis2      
7viii7 tumor m>k] data :5 available2    
7ix7 treatm5t & outcome data2  7x7      
in=mation relat$ to specim5 quality2 &  
7xi7 any o!r in=mation requir$ by !     
,secret>y4  2 &  7#b7 9 subsection 7d7--
  7,a7 by /rik+ & section #cii;,e-#a &  
ins]t+ & sections #cag,u1 #cii;,e-#a1   
#dag;,h1 & #dag;,h-#a2  7,b7 by /rik+   
#bjji ?r\gh #bjac & ins]t+ #bjah ?r\gh  
#bjbb2 &  7,c7 by /rik+ su* purpose &   
ins]t+ su* purposes4  #ajb4 ,improv+    
,*ildhood ,canc] ,surveillance ,section 
#cii;,e-#a ( ! ,public ,heal? ,s]vice   
,act 7#db ,u4,s4,c4 #bhj;e-#c;a7 is     

am5d$--  7#a7 by r$esignat+ subsection  
7b7 z subsection 7d72 &  7#b7 by /rik+  
subsection 7a7 & ins]t+ ! foll[+3  7a7  
,9 g5]al ,! ,secret>y1 act+ ?r\gh !     
,director ( ! ,c5t]s = ,disease ,control
 & ,prev5tion1 may make aw>ds to ,/ate  
canc] regi/ries to enhance & exp&       
infra/ructure to track ! epidemiology ( 
canc] 9 *ildr51 adolesc5ts1 & "y adults4
 ,su* regi/ries may be updat$ to include
 ea* occurr5ce ( su* canc]s )9 a p]iod (
 "t designat$ by ! ,secret>y4  7b7      
,activities ,! grants describ$ 9        
subsection 7a7 may be us$ =-- 7#a7      
id5tify+1 recruit+1 & tra9+ all pot5tial
 s\rces = report+ *ildhood1 adolesc5t1 &
 "y adult canc] cases2  7#b7 develop+   
proc$ures to implem5t e>ly inclusion (  
*ildhood1 adolesc5t1 & "y adult canc]   
cases on ,/ate canc] regi/ries ?r\gh !  
use ( electronic report+2  7#c7 pur*as+ 
infra/ructure to support ! e>ly         
inclusion ( *ildhood1 adolesc5t1 & "y   
adult canc] cases on su* regi/ries2     
7#d7 submitt+ deid5tifi$ data to !      

,c5t]s = ,disease ,control & ,prev5tion 
= inclusion 9 a national database (     
*ildhood1 adolesc5t1 & "y adult canc]s2 
&  7#e7 track+ ! late effects (         
*ildhood1 adolesc5t1 & "y adult canc]s4 
7c7 ,coord9ation ,! ,secret>y %all      
ensure t in=mation collect$ ?r\gh ,/ate 
canc] regi/ries "u ?is section is       
collect$ 9 coord9ation ) cl9ical &      
demographic in=mation collect$ "u       
section #dag;,e7a71 z appropriate4  4   
,b ,p$iatric ,exp]tise at ,,nih  #aaa4  
,inclusion ( at lea/ "o p$iatric        
oncologi/ on ! ,national ,canc]         
,advisory ,bo>d ,clause 7iii7 ( section 
#djf7;h77#b77;,a7 ( ! ,public ,heal?    
,s]vice ,act 7#db ,u4,s4,c4             
#bhd;a7h77#b77;,a77 is am5d$ to read z  
foll[s3  7iii7 ( ! memb]s appo9t$ to !  
,bo>d-- 7,i7 n less ?an #e memb]s %all  
be individuals kn[l$geable 9            
environm5tal c>c9og5esis 7includ+       
c>c9og5esis involv+ occupational &      
diet>y factors72 &  7,,ii7 n less ?an "o
 memb] %all be an individual kn[l$geable

 9 p$iatric oncology2  4  #aab4 ,s5se ( 
,congress reg>d+ p$iatric exp]tise at ! 
,national ,canc] ,in/itute ,x is ! s5se 
( ,congress t ! ,director ( ! ,national 
,canc] ,in/itute %\ld ensure t all      
applicable /udy sections1 committees1   
advisory gr\ps1 & panels at ! ,national 
,canc] ,in/itute include "o or m        
qualifi$ p$iatric oncologi/s1 z         
appropriate4  ,c ,,nih ,report on       
,*ildhood ,canc] ,activities  #aba4     
,report+ on *ildhood canc] rese>*       
projects ,section #dji;,d7c77#c7 ( !    
,public ,heal? ,s]vice ,act 7#db        
,u4,s4,c4 #bhd;h7c77#c77 is am5d$ by--  
7#a7 /rik+ public on & ins]t+ 8public   
on--  7,a7  2  7#b7 /rik+ ! p]iod at !  
end & ins]t+ 2 &2 &  7#c7 ins]t+ at !   
end ! foll[+3  7,b7 *ildhood canc]      
rese>* projects conduct$ or support$ by 
! ,national ,in/itutes ( ,heal?4  4     
,,ii ,,maximiz+ ,,deliv]y3 ,,c>e1       
,,quality ,,( ,,life1 ,,survivor%ip1 ,,&
 ,,c>egiv] ,,support  ,a ,*ildhood      
,canc] ,survivors' ,quality ( ,life ,act

  #bja4 ,canc] survivor%ip programs  7a7
 ,canc] survivor%ip programs ,! ,public 
,heal? ,s]vice ,act is am5d$ by ins]t+  
aft] section #cii,n ( su* ,act 7#db     
,u4,s4,c4 #bhj;g-#b7 ! foll[+3          
#cii,n-#a4 ,pilot programs to explore   
model sy/ems ( c>e = p$iatric canc]     
survivors  7a7 ,9 g5]al ,n lat] ?an #a  
ye> aft] ! date ( enactm5t ( ! ,*ildhood
 ,canc] ,survivor%ip1 ,treatm5t1        
,access1 & ,rese>* ,act ( #bjag1 !      
,secret>y may make aw>ds to eligible    
entities to e/abli% pilot programs to   
develop1 /udy1 or evaluate model sy/ems 
= monitor+ & c>+ = *ildhood canc]       
survivors ?r\gh\t _! lifespan1 includ+  
evaluation ( %>$ c>e & m$ical home &    
cl9ic bas$ models = transition to adult 
c>e4  7b7 ,eligible entities ,9 ?is     
section1 ! t]m eligible entity means--  
7#a7 a m$ical s*ool2  7#b7 a *ildr5's   
hospital2  7#c7 a canc] c5t]2  7#d7 a   
community-bas$ m$ical facility2 or  7#e7
 any o!r entity ) significant exp]i5ce &
 exp]tise 9 treat+ survivors ( *ildhood 

canc]s4  7c7 ,use ( funds ,! ,secret>y  
may make an aw>d "u ?is section to an   
eligible entity only if ! entity        
agrees-- 7#a7 to use ! aw>d to e/abli% a
 pilot program to develop1 /udy1 or     
evaluate "o or m model sy/ems = monitor+
 & c>+ = canc] survivors2 &  7#b7 9     
develop+1 /udy+1 & evaluat+ su* sy/ems1 
to give special emphasis to-- 7,a7      
design ( protocols = diff]5t models (   
foll[-up c>e1 monitor+1 & o!r           
survivor%ip programs 7includ+ pe]       
support & m5tor+ programs72  7,b7       
developm5t ( v>i\s models = provid+     
multidiscipl9>y c>e2  7,c7 dissem9ation 
( in=mation & ! provision ( tra9+ to    
heal? c>e provid]s ab\t h[ to provide   
l+ui/ically & culturally compet5t       
foll[-up c>e & monitor+ to canc]        
survivors & _! families2  7,d7          
developm5t ( psy*osocial int]v5tions &  
support programs to improve ! quality ( 
life ( canc] survivors & _! families2   
7,e7 design ( sy/ems = ! effective      
transf] ( treatm5t in=mation & c>e      

summ>ies f canc] c>e provid]s to o!r    
heal? c>e provid]s 7includ+ risk factors
 & a plan = recomm5d$ foll[-up c>e72    
7,f7 dissem9ation ( ! in=mation &       
programs describ$ 9 subp>agraphs 7,a7   
?r\gh 7,e7 to o!r heal? c>e provid]s    
7includ+ prim>y c>e physicians &        
int]ni/s7 & to canc] survivors & _!     
families1 :]e appropriate2 &  7,g7      
developm5t ( initiatives t promote !    
coord9ation & effective transition ( c>e
 betwe5 canc] c>e provid]s1 prim>y c>e  
physicians1 & m5tal heal? pr(essionals4 
#cii,n-#b4 ,work=ce developm5t          
collaborative on m$ical & psy*osocial   
c>e = *ildhood canc] survivors  7a7 ,9  
g5]al ,! ,secret>y %all1 n lat] ?an #a  
ye> aft] ! date ( enactm5t ( ! ,*ildhood
 ,canc] ,survivor%ip1 ,treatm5t1        
,access1 & ,rese>* ,act ( #bjag1 conv5e 
a ,work=ce ,developm5t ,collaborative on
 ,m$ical & ,psy*osocial ,c>e = ,p$iatric
 ,canc] ,survivors 7ref]r$ to 9 ?is     
section z ! ,collaborative74 ,!         
,collaborative %all be a                

cross-specialty1 multidiscipl9>y gr\p   
compos$ ( educators1 consum] & family   
advocates1 & provid]s ( psy*osocial &   
biom$ical heal? s]vices4  7b7 ,goals &  
reports ,! ,collaborative %all submit to
 ! ,secret>y a report e/abli%+ a plan to
 meet ! foll[+ objectives = m$ical &    
psy*osocial c>e work=ce developm5t3     
7#a7 ,id5tify+1 ref9+1 & broadly        
dissem9at+ to heal? c>e educators       
in=mation ab\t work=ce compet5cies1     
models1 & curricula relevant to provid+ 
m$ical & psy*osocial s]vices to p]sons  
surviv+ p$iatric canc]s4  7#b7 ,adapt+  
curricula = cont9u+ education ( ! exi/+ 
work=ce us+ effici5t workplace-bas$     
le>n+ approa*es4  7#c7 ,develop+ !      
skills ( faculty & o!r tra9]s 9 tea*+   
psy*osocial heal? c>e us+ evid5ce-bas$  
tea*+ /rategies4  7#d7 ,/r5g!n+ !       
emphasis on psy*osocial heal? c>e 9     
educational accr$itation /&>ds &        
pr(essional lic5s+ & c]tification exams 
by recomm5d+ revisions to ! relevant    
ov]sight organizations4  7#e7 ,evaluat+ 

! effectiv5ess ( pati5t navigators 9    
p$iatric canc] survivor%ip c>e4  7#f7   
,evaluat+ ! effectiv5ess ( pe] support  
programs 9 ! psy*osocial c>e ( p$iatric 
canc] pati5ts & survivors4  4  7b7      
,te*nical am5dm5t  7#a7 ,9 g5]al        
,section #c ( ! ,hematological ,canc]   
,rese>* ,inve/m5t & ,education ,act (   
#bjjb 7,public ,law #ajg-agb2 #aaf ,/at4
 #eda7 is am5d$ by /rik+ section #dai;,c
 & ins]t+ section #dag;,c4  7#b7        
,effective date ,! am5dm5t made by      
p>agraph 7#a7 %all take effect z if     
includ$ 9 section #c ( ! ,hematological 
,canc] ,rese>* ,inve/m5t & ,education   
,act ( #bjjb 7,public ,law #ajg-agb2    
#aaf ,/at4 #eda74  #bjb4 ,grants to     
improve c>e = p$iatric canc] survivors  
7a7 ,9 g5]al ,section #dag;,e ( !       
,public ,heal? ,s]vice ,act 7#db        
,u4,s4,c4 #bhe;a-#aa71 z am5d$ by       
section #aja1 is fur!r am5d$--  7#a7 9 !
 section head+1 by /rik+ rese>* &       
aw>5ess & ins]t+ rese>*1 aw>5ess1 &     
survivor%ip2 &  7#b7 by /rik+ subsection

 7b7 & ins]t+ ! foll[+3  7b7 ,improv+   
c>e = p$iatric canc] survivors  7#a7    
,rese>* on causes ( heal? disp>ities 9  
p$iatric canc] survivor%ip  7,a7 ,rese>*
 aw>ds ,! ,director ( ,,nih1 9          
coord9ation ) ongo+ rese>* activities1  
may conduct or support p$iatric canc]   
survivor%ip rese>* includ+ 9 any ( !    
foll[+ areas3  7i7 ,ne$s & outcomes (   
p$iatric canc] survivors )9 m9ority or  
o!r m$ically und]s]v$ populations4  7ii7
 ,heal? disp>ities 9 p$iatric canc]     
survivor%ip outcomes )9 m9ority or o!r  
m$ically und]s]v$ populations4  7iii7   
,b>ri]s t p$iatric canc] survivors )9   
m9ority or o!r m$ically und]s]v$        
populations face 9 receiv+ foll[-up c>e4
  7iv7 ,familial1 socioeconomic1 & o!r  
environm5tal factors & ! impact ( su*   
factors on treatm5t outcomes &          
survivor%ip4  7,b7 ,balanc$ approa* ,9  
conduct+ or support+ rese>* "u          
subp>agraph 7,a77i7 on p$iatric canc]   
survivors )9 m9ority or o!r m$ically    
und]s]v$ populations1 ! ,director (     

,,nih %all ensure t su* rese>* addresses
 bo? ! physical & ! psy*ological ne$s ( 
su* survivors1 z appropriate4  7#b7     
,rese>* on late effects & foll[-up c>e =
 p$iatric canc] survivors ,! ,director (
 ,,nih1 9 coord9ation ) ongo+ rese>*    
activities1 may conduct or support      
rese>* on foll[-up c>e = p$iatric canc] 
survivors1 includ+ 9 any ( ! foll[+     
areas3  7,a7 ,! developm5t ( indicators 
us$ = long-t]m pati5t track+ & analysis 
( ! late effects ( canc] treatm5t =     
p$iatric canc] survivors4  7,b7 ,!      
id5tification ( risk factors associat$ )
 ! late effects ( canc] treatm5t4  7,c7 
,! id5tification ( pr$ictors ( adv]se   
neurocognitive & psy*osocial outcomes4  
7,d7 ,! id5tification ( ! molecul>      
und]p9n+s ( long-t]m complications4     
7,e7 ,! developm5t ( risk pr$iction     
models to id5tify ^? at highe/ risk (   
long-t]m complications4  7,f7           
,initiatives to protect canc] survivors 
f ! late effects ( canc] treatm5t1 by   
develop+ t>get$ int]v5tions to r$uce !  

burd5 ( morbidity borne by canc]        
survivors4  7,g7 ,transitions 9 c>e =   
p$iatric canc] survivors4  7,h7 ,tra9+ (
 pr(essionals to provide l+ui/ically &  
culturally compet5t foll[-up c>e to     
p$iatric canc] survivors4  7,i7 ,diff]5t
 models ( foll[-up c>e4  7,j7 ,exam9+ ! 
co/-effectiv5ess ( ! diff]5t models (   
foll[-up c>e4  4  #bjc4 ,compreh5sive   
long-t]m foll[-up s]vices = p$iatric    
canc] survivors ,"p ,b ( title ,,iii ( !
 ,public ,heal? ,s]vice ,act 7#db       
,u4,s4,c4 #bdc et seq47 is am5d$ by     
ins]t+ aft] section #cag,t ! foll[+3    
#cag,u4 ,/&>ds = compreh5sive long-t]m  
c>e = p$iatric canc] survivors ?r\gh !  
lifespan ,! ,secret>y may e/abli% a task
 =ce to develop & te/ /&>ds1 outcomes1 &
 metrics = high-quality *ildhood canc]  
survivor%ip c>e 9 consultation ) a full 
spectrum ( repres5tation ( exp]ts 9 late
 effects ( disease & treatm5t ( *ildhood
 canc]s1 includ+--  7#a7 oncologi/s :o  
treat *ildr5 & adolesc5ts2  7#b7        
oncologi/s :o treat adults2  7#c7 prim>y

 c>e provid]s engag$ 9 survivor%ip c>e2 
7#d7 survivors ( *ildhood canc]2  7#e7  
p>5ts ( *ildr5 :o h be5 diagnos$ ) &    
treat$ = canc] & p>5ts ( long-t]m       
survivors2  7#f7 pr(essionals :o are    
engag$ 9 ! developm5t ( cl9ical practice
 guidel9es2  7#g7 nurses & social       
work]s2  7#h7 m5tal heal? pr(essionals2 
7#i7 alli$ heal? pr(essionals1 includ+  
physical !rapi/s & occupational !rapi/s2
  7#aj7 exp]ts 9 heal? c>e quality      
measurem5t & improvem5t2 &  7#aa7 o!rs1 
z ! ,secret>y det]m9es appropriate4  4  
#bjd4 ,survivor%ip demon/ration project 
7a7 ,9 g5]al ,n lat] ?an #a ye> aft] !  
date ( ! enactm5t ( ?is ,act1 !         
,secret>y ( ,heal? & ,human ,s]vices    
7ref]r$ to 9 ?is section z ! ,secret>y7 
may c>ry out a demon/ration project ov] 
a #c-ye> p]iod1 design$ to improve !    
quality & effici5cy ( c>e provid$ to    
*ildhood canc] survivors ?r\gh\t _!     
lifespan1 ?r\gh improv$ c>e coord9ation 
z survivors transitions to adult c>e4   
7b7 ,selection ( demon/ration sites     

7#a7 ,maximum numb] ( sites ,! maximum  
numb] ( sites at :i* ! demon/ration     
project "u subsection 7a7 is c>ri$ out  
may n exce$ #aj4  7#b7 ,div]sity ( sites
 ,9 select+ entities to p>ticipate 9 !  
demon/ration project1 ! ,secret>y may1  
to ! ext5t practicable1 include 9 su*   
selection--  7,a7 small-1 m$ium-1 &     
l>ge-siz$ sites2 &  7,b7 sites locat$ 9 
diff]5t geographic areas4  7c7          
,activities "u demon/ration project ,!  
activities conduct$ "u ! demon/ration   
project "u subsection 7a7 may1 9        
addition to any o!r activity specifi$ by
 ! ,secret>y1 include activities t seek 
to develop diff]5t models ( c>e         
coord9ation1 includ+ transitions ( c>e1 
foll[-up c>e1 monitor+1 & o!r           
survivor%ip relat$ programs t utilize a 
multidiscipl9>y1 team bas$ approa* to   
c>e1 includ+ any ( ! foll[+ activities3 
7#a7 ,coord9ation ( c>e & transitions ( 
c>e betwe5 canc] c>e provid]s1 prim>y   
c>e physicians1 m5tal heal? pr(essionals
 & any o!r relevant provid]s4  7#b7     

,dissem9ation ( in=mation to1 & tra9+ (1
 heal? c>e provid]s ab\t l+ui/ically &  
culturally compet5t foll[-up c>e        
specific to canc] survivors4  7#c7      
,developm5t ( monitor+ programs = canc] 
survivors & _! families4  7#d7          
,incorporation ( pe] support & m5tor+   
programs to improve ! quality ( life (  
canc] survivors4  7#e7 ,design+ sy/ems &
 models = ! effective transf] ( treatm5t
 in=mation & c>e summ>ies f canc] c>e   
provid]s to o!r heal? c>e provid]s      
7includ+ risk factors & a c>e plan74    
7#f7 ,evaluation ( functional /atus &   
incorporation ( specific functional ne$s
 into ! c>e plann+ process4  7#g7       
,dissem9ation ( ! in=mation on          
activities & programs conduct$ "u ?is   
section to o!r heal? c>e provid]s       
7includ+ prim>y c>e physicians7 & to    
canc] survivors & _! families1 :]e      
appropriate4  7#h7 ,o!r items det]m9$ by
 ! ,secret>y4  7d7 ,measures ,!         
,secret>y may use ! foll[+ measures to  
assess ! p]=mance ( ea* site3  7#a7     

,pati5t c>e & pati5t_/family            
satisfaction measures4  7#b7 ,res\rce   
utilization measures4  7#c7 ,adult      
survivor%ip measures1 z appropriate4    
7e7 ,,gao ,report ,! ,comptroll] ,g5]al 
( ! ,unit$ ,/ates %all submit a report  
to ,congress evaluat+ ! success ( !     
demon/ration project4 ,su* report %all  
include an assessm5t ( ! impact ( !     
project ^u ! quality & co/-effici5cy (  
s]vices furni%$ to individuals "u ?is   
title1 includ+ an assessm5t ( !         
satisfaction ( su* individuals ) respect
 to su* s]vices t 7 furni%$ "u su*      
project4 ,su* report %all include       
recomm5dations reg>d+ ! possible        
expansion ( ! demon/ration project4  ,b 
,cov]age & ,paym5t ( ,high ,quality ,c>e
  #baa4 ,report by ! ,comptroll] ,g5]al 
7a7 ,9 g5]al ,! ,comptroll] ,g5]al ( !  
,unit$ ,/ates %all conduct a review &   
submit recomm5dations to ,congress on   
exi/+ b>ri]s to obta9+ & pay+ = adequate
 m$ical c>e = survivors ( *ildhood      
canc]4  7b7 ,consid]ations ,9 c>ry+ out 

! review & =mulat+ recomm5dations "u    
subsection 7a71 ! ,comptroll] ,g5]al    
%all--  7#a7 id5tify exi/+ b>ri]s to !  
availability ( complete & coord9at$     
survivor%ip c>e = survivors ( *ildhood  
canc] & to ! availability ( exp]t       
p$iatric palliative c>e1 includ+        
consid]ation (--  7,a7 und]/&+ &        
education among pati5ts1 heal? c>e      
provid]s1 regulators1 & ?ird-p>ty       
payors2  7,b7 adequacy ( paym5t codes to
 cov] necess>y survivor%ip s]vices2     
7,c7 access to necess>y m$ical & o!r    
s]vices = su* survivors1 includ+ !      
s]vices describ$ 9 subsection 7c72 &    
7,d7 lack ( p$iatric palliative c>e     
across all /ages ( illness & hospice    
s]vices = pati5ts approa*+ ! end ( life2
 &  7#b7 make recomm5dations to provide 
improv$ access & paym5t plans = *ildhood
 canc] survivor%ip programs & palliative
 c>e1 includ+ psy*osocial s]vices &     
cov]age ( su* s]vices4  7c7 ,s]vices    
describ$ ,! s]vices describ$ 9 ?is      
subsection are ! foll[+3 7#a7 ,coord9at$

 multidiscipl9>y long-t]m foll[-up c>e )
 access to appropriate p$iatric         
subspeciali/s & adult subspeciali/s )   
specific exp]tise 9 survivor%ip1 includ+
 subspeciali/s ) exp]tise 9 oncology1   
radiation oncology1 surg]y1 c>diology1  
psy*iatry or psy*ology1 endocr9ology1   
pulmonology1 nephrology1 d]matology1    
gynecology1 & urology4  7#b7            
,appropriate organ function te/+        
7p>ticul>ly scre5+ = pot5tial problems  
at mu* y\ng] ages ?an usually indicat$ 9
 ! g5]al population7 & treatm5t1        
includ+--  7,a7 neuropsy*ological te/+ &
 m5tal heal? s]vices2  7,b7 f]tility    
te/+ & treatm5t2  7,c7 evaluation &     
treatm5t = endocr9e disord]s includ+    
gr[? hormone & te/o/]one replacem5t2    
7,d7 diagno/ic imag+ to scre5 = late    
effects ( treatm5t 7includ+ subsequ5t   
canc]s71 su* z mammograms & magnetic    
resonance imag+ te/+ to scre5 = possible
 brea/ canc]2  7,e7 scre5+ = c>diac     
problems1 su* z e*oc>diograms2  7,f7    
scre5+ = o/eoporosis ) bone d5sitometry1

 includ+ duel x-ray absorptiometry &    
monitor+ #be-;hydroxyvitam9 ,d levels2  
7,g7 d5tal cov]age & necess>y d5tal     
implants2  7,h7 he>+ aids & o!r         
pro/hetic devices2 &  7,i7 scre5+ = lung
 problems1 su* z pulmon>y function te/+4
  #a4 ,%ort title2 table ( cont5ts  7a7 
,%ort title ,?is ,act may be cit$ z !   
,*ildhood ,canc] ,survivor%ip1          
,treatm5t1 ,access1 & ,rese>* ,act (    
#bjah or ! ,*ildhood ,canc] ,,/> ,act4  
7b7 ,table ( cont5ts ,! table ( cont5ts 
= ?is ,act is z foll[s3 ,sec4 #a4 ,%ort 
title2 table ( cont5ts4,,title          
,i--,maximiz+ rese>* ?r\gh              
discovery,subtitle ,a--,c>ol9e ,pryce   
,walk] ,conqu] ,*ildhood ,canc]         
,reau?orization ,act,sec4 #aja4         
,*ildr5's canc] biorepositories &       
biospecim5 rese>*4,sec4 #ajb4 ,improv+  
,*ildhood ,canc] ,surveillance4,subtitle
 ,b--,p$iatric exp]tise at ,n,i,h,sec4  
#aaa4 ,inclusion ( at lea/ "o p$iatric  
oncologi/ on ! ,national ,canc]         
,advisory ,bo>d4,sec4 #aab4 ,s5se (     

,congress reg>d+ p$iatric exp]tise at ! 
,national ,canc] ,in/itute4,subtitle    
,c--,,nih report+ on *ildhood canc]     
activities,sec4 #aba4 ,report+ on       
*ildhood canc] rese>* projects4,,title  
,,ii--,maximiz+ deliv]y3 c>e1 quality ( 
life1 survivor%ip1 & c>egiv]            
support,sec4 #bja4 ,canc] survivor%ip   
programs4,sec4 #bjb4 ,grants to improve 
c>e = p$iatric canc] survivors4,sec4    
#bjc4 ,be/ practices = long-t]m foll[-up
 s]vices = p$iatric canc]               
survivors4,sec4 #bjd4 ,te*nical am5dm5t4
  ,i ,maximiz+ rese>* ?r\gh discov]y  ,a
 ,c>ol9e ,pryce ,walk] ,conqu] ,*ildhood
 ,canc] ,reau?orization ,act  #aja4     
,*ildr5's canc] biorepositories &       
biospecim5 rese>* ,section #dag;,e ( !  
,public ,heal? ,s]vice ,act 7#db        
,u4,s4,c4 #bhe;a-#aa7 is am5d$--  7#a7 9
 ! section head+1 by /rik+ rese>* &     
aw>5ess & ins]t+ rese>*1 aw>5ess1 &     
survivor%ip2  7#b7 by /rik+ subsection  
7a7 & ins]t+ ! foll[+3  7a7 ,*ildr5's   
canc] biorepositories  7#a7 ,aw>d ,!    

,secret>y1 act+ ?r\gh ! ,director (     
,,nih1 may make aw>ds to an entity or   
entities describ$ 9 p>agraph 7#d7 to    
build ^u exi/+ rese>* ef=ts to collect  
biospecim5s & cl9ical & demographic     
in=mation ( *ildr51 adolesc5ts1 & "y    
adults ) select$ canc] subtypes 7& _!   
recurr5ces7 = :i* curr5t treatm5ts are  
lea/ effective1 9 ord] to a*ieve a bett]
 und]/&+ ( ! causes ( su* canc] subtypes
 7& _! recurr5ces71 & ! effects &       
outcomes ( treatm5ts = su* canc]s4  7#b7
 ,use ( funds ,am\nts receiv$ "u an aw>d
 "u p>agraph 7#a7 may be us$ to c>ry out
 ! foll[+3 7,a7 ,collect & /ore         
high-quality1 donat$ biospecim5s &      
associat$ cl9ical & demographic         
in=mation on *ildr51 adolesc5ts1 & "y   
adults diagnos$ ) canc] 9 ! ,unit$      
,/ates1 focus+ on *ildr51 adolesc5ts1 & 
"y adults ) canc] enroll$ 9 cl9ical     
trials = :om curr5t treatm5ts are lea/  
effective4 ,activities "u ?is           
subp>agraph may include /orage (        
biospecim5s & associat$ cl9ical &       

demographic data at exi/+               
biorepositories support$ by ! ,national 
,canc] ,in/itute4  7,b7 ,ma9ta9 an      
int]op]able1 secure1 & se>*able database
 on /or$ biospecim5s & associat$ cl9ical
 & demographic data f *ildr51           
adolesc5ts1 & "y adults ) canc] = !     
purposes ( rese>* by sci5ti/s & qualifi$
 heal? c>e pr(essionals4  7,c7 ,e/abli% 
& implem5t proc$ures = evaluat+         
applications = access to su* biospecim5s
 & cl9ical & demographic data f rese>*]s
 & o!r qualifi$ heal? c>e pr(essionals4 
7,d7 ,provide access to biospecim5s &   
cl9ical & demographic data f *ildr51    
adolesc5ts1 & "y adults ) canc] to      
rese>*]s & qualifi$ heal? c>e           
pr(essionals = pe]-review$ rese>*--  7i7
 consi/5t ) ! proc$ures e/abli%$        
pursuant to subp>agraph 7,c72  7ii7 only
 to ! ext5t p]mitt$ by applicable ,f$]al
 & ,/ate law2 &  7iii7 9 a mann] t      
protects p]sonal privacy to ! ext5t     
requir$ by applicable ,f$]al & ,/ate    
privacy law1 at m9imum4  7#c7 ,no       

requirem5t ,no *ild1 adolesc5t1 or "y   
adult ) canc] %all be requir$ "u ?is    
subsection to contribute a specim5 to a 
biorepository or %>e cl9ical or         
demographic data4  7#d7 ,application2   
consid]ations  7,a7 ,application ,to be 
eligible to receive an aw>d "u p>agraph 
7#a7 an entity %all submit an           
application to ! ,secret>y at su* a "t1 
9 su* mann]1 & conta9+ su* in=mation z !
 ,secret>y may reasonably require4  7,b7
 ,consid]ations ,9 evaluat+ applications
 submitt$ "u subp>agraph 7,a71 !        
,secret>y %all consid] ! exi/+          
infra/ructure ( ! entity t w\ld all[ = !
 timely capture ( biospecim5s & relat$  
cl9ical & demographic in=mation =       
*ildr51 adolesc5ts1 & "y adults ) canc] 
= :om curr5t treatm5ts are lea/         
effective4  7#e7 ,privacy protections & 
in=m$ cons5t  7,a7 ,9 g5]al ,! ,secret>y
 may n make an aw>d "u p>agraph 7#a7 to 
an entity unless ! ,secret>y ensures t  
su* entity--  7i7 collects biospecim5s &
 associat$ cl9ical & demographic        

in=mation only f p>ticipants :o h giv5  
_! in=m$ cons5t 9 accordance ) ,f$]al & 
,/ate law2 &  7ii7 protects p]sonal     
privacy to ! ext5t requir$ by applicable
 ,f$]al & ,/ate law1 at m9imum4  7,b7   
,in=m$ cons5t ,! ,secret>y %all ensure  
biospecim5s & associat$ cl9ical &       
demographic in=mation are collect$ )    
in=m$ cons5t1 z describ$ 9 subp>agraph  
7,a77i74  7#f7 ,guidel9es & ov]sight ,! 
,secret>y %all develop & dissem9ate     
appropriate guidel9es = ! developm5t &  
ma9t5ance ( ! biorepositories support$  
"u ?is subsection1 includ+ appropriate  
ov]sight1 to facilitate fur!r rese>* on 
select canc] subtypes 7& _! recurr5ces7 
9 *ildr51 adolesc5ts1 & "y adults ) su* 
canc]s 7& _! recurr5ces74  7#g7         
,coord9ation ,to enc\rage ! greate/     
possible effici5cy & effectiv5ess (     
f$]ally support$ ef=ts ) respect to !   
activities describ$ 9 ?is subsection1 ! 
,secret>y %all ensure ! appropriate     
coord9ation ( programs support$ "u ?is  
section ) exi/+ f$]ally support$ canc]  

regi/ry programs & ! activities "u      
section #cii;,e-#a1 z appropriate4  7#h7
 ,supplem5t n supplant ,funds provid$ "u
 ?is subsection %all be us$ to          
supplem5t1 & n supplant1 ,f$]al &       
non-,f$]al funds available = c>ry+ out !
 activities describ$ 9 ?is subsection4  
7#i7 ,report ,n lat] ?an #d ye>s aft] ! 
date ( enactm5t ( ! ,*ildhood ,canc]    
,survivor%ip1 ,treatm5t1 ,access1 &     
,rese>* ,act ( #bjah1 ! ,secret>y %all  
submit to ,congress a report on-- 7,a7 !
 numb] ( biospecim5s & correspond+      
cl9ical demographic data collect$ ?r\gh 
! biospecim5 rese>* ef=ts support$ "u   
p>agraph 7#a72  7,b7 ! numb] (          
biospecim5s & correspond+ cl9ical       
demographic data reque/$ = use by       
rese>*]s2  7,c7 b>ri]s to ! collection (
 biospecim5s & correspond+ cl9ical      
demographic data2  7,d7 b>ri]s exp]i5c$ 
by rese>*]s or heal? c>e pr(essionals 9 
access+ ! biospecim5s & correspond+     
cl9ical demographic data necess>y = use 
9 rese>*2 &  7,e7 recomm5dations )      

respect to improv+ ! biospecim5 &       
biorepository rese>* ef=ts "u ?is       
subsection4  7#aj7 ,def9itions ,=       
purposes ( ?is subsection3 7,a7 ,aw>d ,!
 t]m aw>d includes a grant1 contract1 or
 coop]ative agreem5t det]m9$ by !       
,secret>y4  7,b7 ,biospecim5 ,! t]m     
biospecim5 includes-- 7i7 solid tumor   
tissue or bone m>r[2  7ii7 normal or    
control tissue2  7iii7 blood & plasma2  
7iv7 ,,dna & ,,rna extractions2  7v7    
familial ,,dna2 &  7vi7 any o!r sample  
relevant to canc] rese>*1 z requir$ by !
 ,secret>y4  7,c7 ,cl9ical & demographic
 in=mation ,! t]m cl9ical & demographic 
in=mation includes--  7i7 date (        
diagnosis2  7ii7 age at diagnosis2      
7iii7 ! pati5t's sex1 race1 e?nicity1 & 
environm5tal exposures2  7iv7 ext5t (   
disease at enrollm5t2  7v7 site (       
meta/ases2  7vi7 location ( prim>y tumor
 cod$2  7vii7 hi/ologic diagnosis2      
7viii7 tumor m>k] data :5 available2    
7ix7 treatm5t & outcome data2  7x7      
in=mation relat$ to specim5 quality2 &  

7xi7 any o!r applicable in=mation       
requir$ by ! ,secret>y4  2 &  7#c7 9    
subsection 7c71 by /rik+ 7#db ,u4,s4,c4 
#bjb note74  #ajb4 ,improv+ ,*ildhood   
,canc] ,surveillance  7a7 ,9 g5]al      
,section #cii;,e-#a ( ! ,public ,heal?  
,s]vice ,act 7#db ,u4,s4,c4 #bhj;e-#c;a7
 is am5d$-- 7#a7 9 subsection 7a7--     
7,a7 by /rik+ %all aw>d a grant & ins]t+
 may make aw>ds to ,/ate canc]          
regi/ries2 &  7,b7 by /rik+ track !     
epidemiology ( p$iatric canc] into a    
compreh5sive nationwide regi/ry ( actual
 occurr5ces ( p$iatric canc] & ins]t+   
collect in=mation to bett] und]/& !     
epidemiology ( canc] 9 *ildr51          
adolesc5ts1 & "y adults2 &  7,c7 by     
/rik+ ! second s5t5ce & ins]t+ ,su*     
regi/ries may be updat$ to include ea*  
occurr5ce ( su* canc]s )9 a p]iod ( "t  
designat$ by ! ,secret>y42  7#b7 by     
r$esignat+ subsection 7b7 z subsection  
7d72  7#c7 by ins]t+ aft] subsection 7a7
 ! foll[+3  7b7 ,activities ,! grants   
describ$ 9 subsection 7a7 may be us$ =--

 7#a7 id5tify+1 recruit+1 & tra9+       
pot5tial s\rces = report+ *ildhood1     
adolesc5t1 & "y adult canc] cases2  7#b7
 develop+ practices to ensure e>ly      
inclusion ( *ildhood1 adolesc5t1 & "y   
adult canc] cases 9 ,/ate canc]         
regi/ries ?r\gh ! use ( electronic      
report+2  7#c7 collect+ & submitt+      
deid5tifi$ data to ! ,c5t]s = ,disease  
,control & ,prev5tion = inclusion 9 a   
national database t includes in=mation  
on *ildhood1 adolesc5t1 & "y adult      
canc]s2 &  7#d7 improv+ ,/ate canc]     
regi/ries & ! database describ$ 9       
p>agraph 7#c71 z appropriate1 includ+ to
 support ! e>ly inclusion ( *ildhood1   
adolesc5t1 & "y adult canc] cases4  7c7 
,coord9ation ,to enc\rage ! greate/     
possible effici5cy & effectiv5ess (     
f$]ally support$ ef=ts ) respect to !   
activities describ$ 9 ?is section1 !    
,secret>y %all ensure ! appropriate     
coord9ation ( programs support$ "u ?is  
section ) o!r f$]ally support$ canc]    
regi/ry programs & ! activities "u      

section #dag;,e7a71 z appropriate4  2 & 
7#d7 9 subsection 7d71 z s r$esignat$1  
by /rik+ regi/ry e/abli%$ pursuant to   
subsection 7a7 & ins]t+ activities      
describ$ 9 ?is section4  7b7            
,au?orization ( appropriations ,section 
#dag;,e7d7 ( ! ,public ,heal? ,s]vice   
,act 7#db ,u4,s4,c4 #bhe;a-#aa7;d77 is  
am5d$--  7#a7 by /rik+ #bjji ?r\gh #bjac
 & ins]t+ #bjai ?r\gh #bjbc2 &  7#b7 by 
/rik+ ! second s5t5ce4  ,b ,p$iatric    
exp]tise at ,,nih  #aaa4 ,inclusion ( at
 lea/ "o p$iatric oncologi/ on !        
,national ,canc] ,advisory ,bo>d ,clause
 7iii7 ( section #djf7;h77#b77;,a7 ( !  
,public ,heal? ,s]vice ,act 7#db        
,u4,s4,c4 #bhd;a7h77#b77;,a77 is am5d$--
  7#a7 by /rik+ ,bo>d n less ?an five & 
ins]t+ 8,bo>d--  7,i7 n less ?an #e  2  
7#b7 by ins]t+ & aft] ! semicolon2 &    
7#c7 by add+ at ! end ! foll[+3  7,,ii7 
n less ?an "o memb] %all be an          
individual kn[l$geable 9 p$iatric       
oncology2  4  #aab4 ,s5se ( ,congress   
reg>d+ p$iatric exp]tise at ! ,national 

,canc] ,in/itute ,x is ! s5se (         
,congress t ! ,director ( ! ,national   
,canc] ,in/itute %\ld ensure t all      
applicable /udy sections1 committees1   
advisory gr\ps1 & panels at ! ,national 
,canc] ,in/itute include "o or m        
qualifi$ p$iatric oncologi/s1 z         
appropriate4  ,c ,,nih report+ on       
*ildhood canc] activities  #aba4        
,report+ on *ildhood canc] rese>*       
projects ,! ,director ( ! ,national     
,in/itutes ( ,heal? %all ensure t       
*ildhood canc] rese>* projects conduct$ 
or support$ by ! ,national ,in/itutes ( 
,heal? are includ$ 9 appropriate reports
 to ,congress1 :i* may include !        
,p$iatric ,rese>* ,initiative report4   
,,ii ,maximiz+ deliv]y3 c>e1 quality (  
life1 survivor%ip1 & c>egiv] support    
#bja4 ,canc] survivor%ip programs  7a7  
,pilot programs to explore model sy/ems 
( c>e = p$iatric canc] survivors  7#a7  
,9 g5]al ,! ,secret>y ( ,heal? & ,human 
,s]vices 7ref]r$ to 9 ?is section z !   
,secret>y7 may make aw>ds to eligible   

entities to e/abli% pilot programs to   
develop1 /udy1 or evaluate model sy/ems 
= monitor+ & c>+ = *ildhood canc]       
survivors ?r\gh\t _! lifespan1 includ+  
evaluation ( models = transition to     
adult c>e & c>e coord9ation4  7#b7      
,aw>ds  7,a7 ,types ( entities ,9 mak+  
aw>ds "u ?is subsection1 ! ,secret>y    
%all1 to ! ext5t practicable1 include-- 
7i7 small1 m$ium1 & l>ge-siz$ eligible  
entities2 &  7ii7 sites locat$ 9 diff]5t
 geographic areas1 includ+ rural & urban
 areas4  7,b7 ,eligible entities ,9 ?is 
subsection1 ! t]m eligible entity       
means--  7i7 a m$ical s*ool2  7ii7 a    
*ildr5's hospital2  7iii7 a canc] c5t]2 
7iv7 a community-bas$ m$ical facility2  
or  7v7 any o!r entity ) significant    
exp]i5ce & exp]tise 9 treat+ survivors (
 *ildhood canc]s4  7#c7 ,use ( funds    
,funds aw>d$ "u ?is subsection may be   
us$-- 7,a7 to develop1 /udy1 or evaluate
 "o or m models = monitor+ & c>+ = canc]
 survivors2 &  7,b7 9 develop+1 /udy+1 &
 evaluat+ su* models1 to give special   

emphasis to-- 7i7 design ( models (     
foll[-up c>e1 monitor+1 & o!r           
survivor%ip programs 7includ+ pe]       
support & m5tor+ programs72  7ii7       
developm5t ( models = provid+           
multidiscipl9>y c>e2  7iii7 dissem9ation
 ( in=mation to heal? c>e provid]s ab\t 
culturally & l+ui/ically appropriate    
foll[-up c>e = canc] survivors & _!     
families1 z appropriate & practicable2  
7iv7 developm5t ( psy*osocial & support 
programs to improve ! quality ( life (  
canc] survivors & _! families1 :i* may  
include pe] support & m5tor+ programs2  
7v7 design ( sy/ems = ! effective       
transf] ( treatm5t in=mation & c>e      
summ>ies f canc] c>e provid]s to o!r    
heal? c>e provid]s 7includ+ risk factors
 & a plan = recomm5d$ foll[-up c>e72    
7vi7 dissem9ation ( ! in=mation &       
programs describ$ 9 clauses 7i7 ?r\gh   
7v7 to o!r heal? c>e provid]s 7includ+  
prim>y c>e physicians & int]ni/s7 & to  
canc] survivors & _! families1 :]e      
appropriate & 9 accordance ) ,f$]al &   

,/ate law2 &  7vii7 developm5t (        
initiatives t promote ! coord9ation &   
effective transition ( c>e betwe5 canc] 
c>e provid]s1 prim>y c>e physicians1    
m5tal heal? pr(essionals1 & o!r heal?   
c>e pr(essionals1 z appropriate1 includ+
 models t use a team-bas$ or            
multi-discipl9>y approa* to c>e4  7b7   
,work=ce developm5t = heal? c>e provid]s
 on m$ical & psy*osocial c>e = *ildhood 
canc] survivors  7#a7 ,9 g5]al ,!       
,secret>y %all1 n lat] ?an #a ye> aft] !
 date ( enactm5t ( ?is ,act1 conduct a  
review ( ! activities ( ! ,dep>tm5t (   
,heal? & ,human ,s]vices relat$ to      
work=ce developm5t = heal? c>e provid]s 
:o treat p$iatric canc] pati5ts &       
survivors4 ,su* review %all include--   
7,a7 an assessm5t ( ! effectiv5ess (    
supportive psy*osocial c>e s]vices =    
p$iatric canc] pati5ts & survivors1     
includ+ p$iatric canc] survivor%ip c>e  
pati5t navigators & pe] support         
programs2  7,b7 id5tification ( exi/+   
models relevant to provid+ m$ical &     

psy*osocial s]vices to individuals      
surviv+ p$iatric canc]s1 & programs     
relat$ to tra9+ = heal? pr(essionals :o 
provide su* s]vices to individuals      
surviv+ p$iatric canc]s2 &  7,c7        
recomm5dations = improv+ ! provision (  
psy*osocial c>e = p$iatric canc]        
survivors & pati5ts4  7#b7 ,report ,n   
lat] ?an #b ye>s aft] ! date ( enactm5t 
( ?is ,act1 ! ,secret>y %all submit to !
 ,committee on ,heal?1 ,education1      
,labor1 & ,p5sions ( ! ,s5ate &         
,committee on ,en]gy & ,comm]ce ( !     
,h\se ( ,repres5tatives1 a report       
conc]n+ ! f9d+s & recomm5dations f !    
review conduct$ "u p>agraph 7#a74  #bjb4
 ,grants to improve c>e = p$iatric canc]
 survivors  7a7 ,9 g5]al ,section       
#dag;,e ( ! ,public ,heal? ,s]vice ,act 
7#db ,u4,s4,c4 #bhe;a-#aa71 z am5d$ by  
section #aja1 is fur!r am5d$ by /rik+   
subsection 7b7 & ins]t+ ! foll[+3  7b7  
,improv+ c>e = p$iatric canc] survivors 
7#a7 ,rese>* on p$iatric canc]          
survivor%ip ,! ,director ( ,,nih1 9     

coord9ation ) ongo+ rese>* activities1  
may cont9ue to conduct or support       
p$iatric canc] survivor%ip rese>*       
includ+ 9 any ( ! foll[+ areas3  7,a7   
,outcomes ( p$iatric canc] survivors1   
includ+ )9 m9ority or o!r m$ically      
und]s]v$ populations & ) respect to     
heal? disp>ities ( su* outcomes4  7,b7  
,b>ri]s to foll[-up c>e = p$iatric canc]
 survivors1 includ+ )9 m9ority or o!r   
m$ically und]s]v$ populations4  7,c7 ,! 
impact ( relevant factors1 :i* may      
include familial1 socioeconomic1 & o!r  
environm5tal factors1 on treatm5t       
outcomes & survivor%ip4  7,d7 ,!        
developm5t ( indicators us$ = long-t]m  
foll[-up & analysis ( ! late effects (  
canc] treatm5t = p$iatric canc]         
survivors4  7,e7 ,! id5tification (1 z  
applicable-- 7i7 risk factors associat$ 
) ! late effects ( canc] treatm5t2  7ii7
 pr$ictors ( adv]se neurocognitive &    
psy*osocial outcomes2 &  7iii7 !        
molecul> basis ( long-t]m complications4
  7,f7 ,! developm5t ( t>get$           

int]v5tions to r$uce ! burd5 ( morbidity
 borne by canc] survivors 9 ord] to     
protect su* canc] survivors f ! late    
effects ( canc]4  7#b7 ,balanc$ approa* 
,9 conduct+ or support+ rese>* "u       
p>agraph 7#a77;,a77i7 on p$iatric canc] 
survivors )9 m9ority or o!r m$ically    
und]s]v$ populations1 ! ,director (     
,,nih %all ensure t su* rese>* addresses
 bo? ! physical & ! psy*ological ne$s ( 
su* survivors1 z appropriate4  4  #bjc4 
,be/ practices = long-t]m foll[-up      
s]vices = p$iatric canc] survivors ,!   
,secret>y ( ,heal? & ,human ,s]vices may
 facilitate ! id5tification ( be/       
practices = *ildhood & adolesc5t canc]  
survivor%ip c>e1 &1 z appropriate1 may  
consult ) individuals :o h exp]tise 9   
late effects ( disease & treatm5t (     
*ildhood & adolesc5t canc]s1 :i* may    
include--  7#a7 oncologi/s1 :i* may     
include p$iatric oncologi/s2  7#b7      
prim>y c>e provid]s engag$ 9 survivor%ip
 c>e2  7#c7 survivors ( *ildhood &      
adolesc5t canc]2  7#d7 p>5ts ( *ildr5 & 

adolesc5ts :o h be5 diagnos$ ) & treat$ 
= canc] & p>5ts ( long-t]m survivors2   
7#e7 nurses & social work]s2  7#f7 m5tal
 heal? pr(essionals2  7#g7 alli$ heal?  
pr(essionals1 includ+ physical !rapi/s &
 occupational !rapi/s2 &  7#h7 o!rs1 z !
 ,secret>y det]m9es appropriate4  #bjd4 
,te*nical am5dm5t  7a7 ,9 g5]al ,section
 #c ( ! ,hematological ,canc] ,rese>*   
,inve/m5t & ,education ,act ( #bjjb     
7,public ,law #ajg-agb2 #aaf ,/at4 #eda7
 is am5d$ by /rik+ section #dai;,c &    
ins]t+ section #dag;,c4  7b7 ,effective 
date ,! am5dm5t made by subsection 7a7  
%all take effect z if includ$ 9 section 
#c ( ! ,hematological ,canc] ,rese>*    
,inve/m5t & ,education ,act ( #bjjb     
7,public ,law #ajg-agb2 #aaf ,/at4      
#eda74  ,m>* #ab1 #bjah,report$ ) an    
am5dm5t