,,ib ,union ,cal5d> ,no4 #bci #aae? ,,congress #a/ ,session ,h4 ,r4 #abbb ,report ,no4 #aae-cbi ,,9 ,,! ,,h\se ,,( ,,repres5tatives ,febru>y #bg1 #bjag ,mr4 ,bilirakis 7= himself & ,mr4 ,s*iff7 introduc$ ! foll[+ bill2 :i* 0 ref]r$ to ! ,committee on ,en]gy & ,comm]ce ,septemb] #be1 #bjag ,additional sponsors3 ,mr4 ,abraham1 ,mr4 ,swalwell ( ,cali=nia1 ,mr4 ,loebsack1 ,mr4 ,bo/1 ,mr4 ,soto1 ,mr4 ,pocan1 ,mrs4 ,mc,morris ,rodg]s1 ,mrs4 ,murphy ( ,florida1 ,mr4 ,web/] ( ,florida1 ,mr4 ,mull91 ,mr4 ,evans1 ,mr4 ,/iv]s1 ,mr4 ,gu?rie1 ,mr4 ,connolly1 ,ms4 ,norton1 ,mr4 ,nolan1 ,mr4 ,fitzpatrick1 ,mr4 ,coll9s ( ,new ,york1 ,ms4 ,velzquez1 ,ms4 ,ros-,leht951 ,mr4 ,sessions1 ,mr4 ,griffi?1 ,mr4 ,ellison1 ,mr4 ,m\lton1 ,mr4 ,crd5as1 ,mr4 ,walb]g1 & ,mr4 ,meehan ,septemb] #be1 #bjag ,report$ ) an am5dm5t1 committ$ to ! ,committee ( ! ,:ole ,h\se on ! ,/ate ( ! ,union1 & ord]$ to be pr9t$ ,/rike out all aft] ! enact+ clause & ins]t ! "p pr9t$ 9 italic ,= text ( introduc$ bill1 see copy ( bill z introduc$ on ,febru>y #bg1 #bjag ,a ,,bill ,to am5d ! ,public ,heal? ,s]vice ,act to coord9ate ,f$]al cong5ital he>t disease rese>* ef=ts & to improve public education & aw>5ess ( cong5ital he>t disease1 & = o!r purposes4 #a4 ,%ort title ,?is ,act may be cit$ z ! ,cong5ital ,he>t ,futures ,reau?orization ,act ( #bjag4 #b4 ,national cong5ital he>t disease surveillance sy/em ,section #cii,v-#b ( ! ,public ,heal? ,s]vice ,act 7#db ,u4,s4,c4 #bhj;g-#ac7 is am5d$ to read z foll[s3 #cii,v-#b4 ,national cong5ital he>t disease rese>*1 surveillance1 & aw>5ess 7a7 ,9 g5]al ,! ,secret>y %all-- 7#a7 enhance & exp& rese>* & surveillance infra/ructure to /udy & track ! epidemiology ( cong5ital he>t disease 79 ?is section ref]r$ to z ,,*d72 & 7#b7 aw>d grants to eligible entities to und]take ! activities describ$ 9 ?is section4 7b7 ,national cong5ital he>t disease /udy 7#a7 ,9 g5]al ,! ,secret>y %all plan1 develop1 implem5t1 & submit "o or m reports to ! ,congress on a /udy to improve und]/&+ ( ! epidemiology ( ,,*d across ! lifespan1 f bir? to adul?ood1 ) p>ticul> int]e/ 9 ! foll[+3 7,a7 ,heal? c>e utilization ( ^? affect$ by ,,*d4 7,b7 ,demographic factors associat$ ) ,,*d1 su* z age1 race1 e?nicity1 g5d]1 & family hi/ory ( individuals :o are diagnos$ ) ! disease4 7,c7 ,outcome measures1 su* t analysis ( ! outcome measures w all[ d]ivation ( evid5ce-bas$ be/ practices & guidel9es = ,,*d pati5ts4 7#b7 ,p]missible consid]ations ,! /udy "u ?is subsection may-- 7,a7 ga!r data on ! heal? outcomes ( a div]se population ( ^? affect$ by ,,*d2 7,b7 consid] heal? disp>ities among ^? affect$ by ,,*d1 :i* may include ! consid]ation ( pr5atal exposures2 & 7,c7 incorporate behavioral1 emotional1 & educational outcomes ( ^? affect$ by ,,*d4 7#c7 ,public access ,data g5]at$ f ! /udy "u ?is subsection %all be made available-- 7,a7 = purposes ( ,,*d rese>*1 subject to appropriate protections ( p]sonal privacy1 includ+ protections requir$ by p>agraph 7#d72 & 7,b7 to ! public1 subject to p>agraph 7#d7 & ) appropriate exceptions = protection ( p]sonal privacy4 7#d7 ,pati5t privacy ,! ,secret>y %all ensure t ! /udy "u ?is subsection is c>ri$ out 9 a mann] t complies ) ! requirem5ts applicable to a cov]$ entity "u ! regulations promulgat$ pursuant to section #bfd7;c7 ( ! ,heal? ,insurance ,portability & ,acc\ntability ,act ( #aiif4 7c7 ,eligibility = grants ,to be eligible to receive a grant "u subsection 7a77#b71 an entity %all-- 7#a7 be a public or private nonpr(it entity ) specializ$ exp]i5ce 9 ,,*d2 & 7#b7 submit to ! ,secret>y an application at su* "t1 9 su* mann]1 & conta9+ su* in=mation z ! ,secret>y may require4 7d7 ,au?orization ( appropriations ,to c>ry out ?is section1 !re is au?oriz$ to be appropriat$ #d1jjj1jjj = ea* ( fiscal ye>s #bjah ?r\gh #bjbb4 4 #c4 ,cong5ital he>t disease rese>* ,section #dbe ( ! ,public ,heal? ,s]vice ,act 7#db ,u4,s4,c4 #bhe;b-#h7 is am5d$ to read z foll[s3 #dbe4 ,cong5ital he>t disease 7a7 ,9 g5]al ,! ,director ( ! ,in/itute may exp&1 int5sify1 & coord9ate rese>* & relat$ activities ( ! ,in/itute ) respect to cong5ital he>t disease1 :i* may include cong5ital he>t disease rese>* ) respect to-- 7#a7 causation ( cong5ital he>t disease1 includ+ g5etic causes2 7#b7 long-t]m outcomes 9 individuals ) cong5ital he>t disease1 includ+ infants1 *ildr51 te5ag]s1 adults1 & eld]ly individuals2 7#c7 diagnosis1 treatm5t1 & prev5tion2 7#d7 /udies us+ longitud9al data & retrospective analysis to id5tify effective treatm5ts & outcomes = individuals ) cong5ital he>t disease2 & 7#e7 id5tify+ b>ri]s to lifelong c>e = individuals ) cong5ital he>t disease4 7b7 ,coord9ation ( rese>* activities ,! ,director ( ! ,in/itute may coord9ate rese>* ef=ts relat$ to cong5ital he>t disease among multiple rese>* in/itutions & may develop rese>* networks4 7c7 ,m9ority & m$ically und]s]v$ communities ,9 c>ry+ out ! activities describ$ 9 ?is section1 ! ,director ( ! ,in/itute %all consid] ! application ( su* rese>* & o!r activities to m9ority & m$ically und]s]v$ communities4 7d7 ,report f ,,nih ,n lat] ?an "o ye> aft] ! date ( ! enactm5t ( ! ,cong5ital ,he>t ,futures ,reau?orization ,act ( #bjag1 ! ,director ( ,,nih1 act+ ?r\gh ! ,director ( ! ,in/itute1 %all provide a report to ,congress-- 7#a7 outl9+ ! ongo+ rese>* ef=ts ( ! ,national ,in/itutes ( ,heal? reg>d+ cong5ital he>t disease2 & 7#b7 id5tify+-- 7,a7 future plans = rese>* reg>d+ cong5ital he>t disease2 & 7,b7 ! areas ( greate/ ne$ = su* rese>*4 4 ,septemb] #be1 #bjag ,report$ ) an am5dm5t1 committ$ to ! ,committee ( ! ,:ole ,h\se on ! ,/ate ( ! ,union1 & ord]$ to be pr9t$