,i #aad? ,,congress #b;d ,session ,h4 ,r4 #edgi ,,9 ,,! ,,h\se ,,( ,,repres5tatives ,june #ad1 #bjaf ,ms4 ,mc,collum introduc$ ! foll[+ bill2 :i* 0 ref]r$ to ! ,committee on ,en]gy & ,comm]ce ,a ,,bill ,to provide = programs "u ! ,dep>tm5t ( ,heal? & ,human ,s]vices to improve newborn scre5+1 evaluation1 & int]v5tion = critical cong5ital he>t defect4 #a4 ,%ort title ,?is ,act may be cit$ z ! ,scre5+ ,he>ts 9 ,newborns = ,e>ly ,detection ( ,cong5ital ,he>t ,defect ,act or ! ,,%9e ,act4 #b4 ,programs to improve newborn scre5+1 evaluation1 & int]v5tion = critical cong5ital he>t defect 7a7 ,/atewide newborn scre5+ programs1 evaluation & int]v5tion programs & in=mation sy/ems 7#a7 ,9 g5]al ,! ,secret>y ( ,heal? & ,human ,s]vices %all make aw>ds ( grants or coop]ative agreem5ts to ,/ates to-- 7,a7 develop & improve1 ) respect to critical cong5ital he>t defect1 /atewide newborn ,,c*d scre5+1 evaluation1 diagnosis1 results report+1 data collection & surveillance1 & int]v5tion programs & sy/ems2 & 7,b7 assi/ 9 ! recruitm5t1 ret5tion1 education1 & tra9+ ( qualifi$ p]sonnel2 = ! purposes describ$ 9 p>agraph 7#b74 7#b7 ,purposes ,= purposes ( p>agraph 7#a71 ! purposes describ$ 9 ?is p>agraph are ! foll[+3 7,a7 ,to develop & monitor ! efficacy ( /atewide programs & sy/ems = ,,c*d scre5+ ( newborns1 evaluate & diagnose newborns ref]r$ f scre5+ programs1 & provide = educational & m$ical int]v5tions = newborns id5tifi$ ) critical cong5ital he>t defect 7& o!r heal? conditions associat$ ) hypoxemia74 7,b7 ,to provide = e>ly int]v5tion1 includ+-- 7i7 ref]ral to & deliv]y ( in=mation & s]vices1 relat+ to ,,c*d scre5+1 evaluation1 & diagnosis1 by entities & ag5cies1 includ+ cl9ical1 community1 consum]1 & p>5t-bas$ ag5cies & organizations2 & 7ii7 o!r programs m&at$ by "p ,c ( ! ,individuals ) ,disabilities ,education ,act 7#bj ,u4,s4,c4 #adca et seq471 :i* (f] programs specifically design$ to meet ! unique ne$s ( newborns ) critical cong5ital he>t defect & :i* e/abli% & fo/] family-to-family support me*anisms critical 9 ! fir/ mon?s aft] a newborn is id5tifi$ ) critical cong5ital he>t defect4 7,c7 ,to collect data on /atewide newborn ,,c*d scre5+ & scre5+ ( second>y conditions & evaluation & int]v5tion programs & sy/ems t c be appli$ = quality improvem5t1 rese>*1 program evaluation1 & policy developm5t4 7,d7 ,to enc\rage ! adoption by ,/ate ag5cies ( models describ$ 9 subp>agraph 7,e74 7,e7 ,to provide = o!r activities1 :i* may include ! developm5t ( effici5t models to ensure t newborns :o are id5tifi$ ) critical cong5ital he>t defect ?r\gh scre5+ receive foll[-up by a qualifi$ heal? c>e provid]4 7b7 ,,c*d in=mation & surveillance sy/ems & appli$ rese>* 7#a7 ,c5t]s = disease control & prev5tion ,9 accordance ) ! recomm5dations describ$ 9 p>agraph 7#e71 ! ,secret>y1 act+ ?r\gh ! ,director ( ! ,c5t]s = ,disease ,control & ,prev5tion1 %all make aw>ds ( grants or coop]ative agreem5ts to provide te*nical assi/ance to ,/ate ag5cies to complem5t intramural programs & to conduct appli$ rese>* relat$ to newborn ,,c*d scre5+1 evaluation & int]v5tion programs1 & data collection & in=mation sy/ems1 su* z-- 7,a7 /&>diz$ proc$ures = data managem5t & program effectiv5ess to ensure quality monitor+ ( newborn ,,c*d scre5+1 evaluation1 diagnosis1 & int]v5tion programs & sy/ems2 7,b7 evaluation ( ! curr5t capacity ( exi/+ population-bas$ ,/ate surveillance & track+ to monitor ! effectiv5ess ( newborn ,,c*d scre5+ to r$uce infant mortality & morbidity2 7,c7 provision ( te*nical assi/ance on data collection & managem5t1 includ+ lev]ag+ an electronic heal? record framework = critical cong5ital he>t defect data & report+2 7,d7 /udy ( ! co/s & effectiv5ess ( newborn ,,c*d scre5+ & second>y t>gets & nont>get conditions associat$ ) hypoxemia2 7,e7 evaluation & int]v5tion programs & sy/ems conduct$ by ,/ate-bas$ programs 9 ord] to answ] issues ( importance to ,/ate & national policymak]s2 7,f7 fur!r /udy ( ! causes & risk factors = critical cong5ital he>t defect2 7,g7 /udy ( ! effectiv5ess ( newborn ,c,c,h,ds scre5+1 foll[up diagno/ics1 m$ical evaluations & int]v5tion programs & sy/ems by assess+ ! heal?1 intellectual1 & social developm5tal1 cognitive1 & neurodevelopm5tal /atus ( su* *ildr5 z !y gr[ & ent] s*ool age2 & 7,h7 data report+ by ,/ate ag5cies to ! ,dep>tm5t ( ,heal? & ,human ,s]vices reg>d+ ,,c*d scre5+ conduct$ z "p ( ,/ate-bas$ bir? defects monitor+ & long-t]m foll[ up programs = ! purpose ( provid+ appropriate s]vices4 7#b7 ,national ,in/itutes ( ,heal? ,9 accordance ) ! recomm5dations describ$ 9 p>agraph 7#e71 ! ,director ( ! ,national ,in/itutes ( ,heal? %all1 = purposes ( ?is section-- 7,a7 conduct a program ( rese>* & developm5t on ! efficacy ( new scre5+ te*niques & te*nology1 includ+ cl9ical /udies ( scre5+ me?ods1 foll[-up diagno/ic tools1 & /udies on efficacy ( int]v5tion & relat$ rese>*2 & 7,b7 act+ ?r\gh ! ,national ,libr>y ( ,m$ic9e ( ! ,national ,in/itutes ( ,heal?1 assi/ ! ,secret>y ) ! developm5t & deploym5t ( exp&$ cod+ t]m9ology = pulse oximetry scre5+ = ,,c*d & foll[-up diagno/ic te/+ relat$ to scre5+ & integrat+ results into electronic m$ical records & z "p ( int]op]ability ) public heal? in=mation sy/ems4 7#c7 ,heal? res\rces s]vices adm9i/ration ,9 accordance ) ! recomm5dations describ$ 9 p>agraph 7#e71 ! ,adm9i/rator ( ! ,heal? ,res\rces & ,s]vices ,adm9i/ration %all1 9 coord9ation ) ! ,director ( ! ,c5t]s = ,disease ,control & ,prev5tion-- 7,a7 guide ! assessm5t & improvem5t ( scre5+ /&>ds & infra/ructure ne$$ = ! implem5tation ( a public heal? approa* to po9t ( c>e scre5+ = cong5ital he>t defects2 & 7,b7 coord9ate & collaborate 9 assi/+ ,/ates to e/abli% newborn ,,c*d scre5+ & o!r second>y conditions associat$ ) hypoxemia1 evaluation1 diagnosis1 & int]v5tion programs & sy/ems "u p>agraph 7#a7 & to develop a data collection sy/em "u p>agraph 7#b74 7#d7 ,,fda c5t] = devices & radiological heal? ,9 accordance ) ! recomm5dations describ$ 9 p>agraph 7#e71 ! ,c5t] = ,devices & ,radiological ,heal? ( ! ,food & ,drug ,adm9i/ration %all provide guidance to heal? c>e provid]s1 indu/ry1 & /aff ( ! ,food & ,drug ,adm9i/ration on pulse oximet]s & ! unique role ( pulse oximetry 9 scre5+ neonatal pati5ts4 7#e7 ,recomm5dations ,! recomm5dations describ$ 9 ?is p>agraph are ! foll[+ recomm5dations conta9$ 9 ! plan ( action ( ! ,int]ag5cy ,coord9at+ ,committee on ,newborn & ,*ild ,scre5+ e/abli%$ "u section #aad ( ! ,public ,heal? ,s]vice ,act 7#db ,u4,s4,c4 #cjj;b-#ac73 7,a7 ,! recomm5dation = ! ,c5t]s = ,disease ,control & ,prev5tion to fund surveillance activities to monitor ! ,,c*d l9k to infant mortality & o!r heal? outcomes4 7,b7 ,! recomm5dation = ! ,national ,in/itutes ( ,heal? to fund rese>* activities to det]m9e ! relation%ips among ! scre5+ te*nology1 diagno/ic processes1 c>e provid$1 & heal? outcomes ( affect$ newborns ) ,,c*d z a result ( prospective newborn scre5+4 7,c7 ,! recomm5dation = ! ,heal? ,res\rces & ,s]vices ,adm9i/ration to guide ! developm5t ( scre5+ /&>ds & infra/ructure ne$$ = ! implem5tation ( a public heal? approa* to po9t ( s]vice scre5+ = critical cong5ital cyanotic he>t defect4 7,d7 ,! recomm5dation = ! ,heal? ,res\rces & ,s]vices ,adm9i/ration to fund ! developm5t (1 9 collaboration ) public heal? & heal? c>e pr(essional organizations & families1 appropriate education & tra9+ mat]ials = families & public heal? & heal? c>e pr(essionals relevant to ! scre5+ & treatm5t ( ,,c*d4 7#f7 ,consultation ,9 c>ry+ out programs "u ?is subsection1 ! ,adm9i/rator ( ! ,heal? ,res\rces & ,s]vices ,adm9i/ration1 ! ,director ( ! ,c5t]s = ,disease ,control & ,prev5tion1 & ! ,director ( ! ,national ,in/itutes ( ,heal? %all collaborate & consult ) o!r ,f$]al ag5cies2 ,/ate & local ag5cies1 includ+ ^? responsible = newborn scre5+ & e>ly int]v5tion s]vices "u ! ,m$icaid program "u title ,,xix ( ! ,social ,security ,act 7#db ,u4,s4,c4 #acif et seq471 "u ! ,*ildr5's ,heal? ,insurance ,program "u title ,,xxi ( ! ,social ,security ,act 7#db ,u4,s4,c4 #acig;aa et seq47 7,/ate ,*ildr5's ,heal? ,insurance ,program71 "u ! ,mat]nal & ,*ild ,heal? ,block ,grant ,program "u title ,v ( ! ,social ,security ,act 7#db ,u4,s4,c4 #gja et seq471 & "u "p ,c ( ! ,individuals ) ,disabilities ,education ,act 7#bj ,u4,s4,c4 #adca et seq472 consum] gr\ps (1 & ^? t s]ve1 individuals ) cong5ital he>t defect & families ( su* individuals2 appropriate national m$ical & o!r heal? & education specialty organizations2 p]sons liv+ ) critical cong5ital he>t defect & families ( su* p]sons2 o!r qualifi$ pr(essional p]sonnel :o are pr(ici5t 9 cong5ital he>t defect1 ,,c*d1 & relat$ conditions1 & :o possess ! specializ$ k1 skills1 & attributes ne$$ to s]ve newborns1 infants1 toddl]s1 & *ildr5 diagnos$ ) cong5ital he>t defect & families ( su* newborns1 infants1 toddl]s1 & *ildr52 ?ird-p>ty pay]s & manag$ c>e organizations2 & relat$ comm]cial indu/ries4 7#g7 ,policy developm5t ,! ,adm9i/rator ( ! ,heal? ,res\rces & ,s]vices ,adm9i/ration1 ! ,director ( ! ,c5t]s = ,disease ,control & ,prev5tion1 & ! ,director ( ! ,national ,in/itutes ( ,heal? %all coord9ate & collaborate to develop & update recomm5dations = policy developm5t at ! ,f$]al & ,/ate levels & ) ! private sector1 includ+ consum]1 m$ical1 & o!r heal? & education pr(essional-bas$ organizations1 ) respect to newborn scre5+1 evaluation1 diagnosis1 & int]v5tion programs & sy/ems4 ,su* recomm5dations & updates %all be made available on ! public ,web site ( ! ,dep>tm5t ( ,heal? & ,human ,s]vices4 7c7 ,def9itions ,= purposes ( ?is section3 7#a7 ,! t]m ,,c*d means critical cong5ital he>t defect4 7#b7 ,! t]m newborn ,,c*d scre5+ means objective physiologic proc$ures to detect possible cong5ital he>t problems & to id5tify newborns & infants :o require fur!r m$ical evaluations or int]v5tions4 7d7 ,au?orization ( appropriations ,!re is au?oriz$ to be appropriat$ su* sums z may be necess>y to c>ry out ?is section = ea* ( fiscal ye>s #bjag ?r\gh #bjba4