,,ic #aae? ,,congress #b;d ,session ,s4 #bib ,,9 ,,! ,,h\se ,,( ,,repres5tatives ,m>* #bf1 #bjah,ref]r$ to ! ,committee on ,en]gy & ,comm]ce ,,an ,,act ,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 ( #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 ,pass$ ! ,s5ate ,m>* #bb1 #bjah4;,julie ,e4 ,adams1,secret>y