,,ii #aae? ,,congress #a/ ,session ,s4 #dgg ,,9 ,,! ,,s5ate ,,( ,,! ,,unit$ ,,/ates ,febru>y #bh1 #bjag,mr4 ,durb9 7= himself & ,mr4 ,casey7 introduc$ ! foll[+ bill2 :i* 0 read twice & ref]r$ to ! ,committee on ,heal?1 ,education1 ,labor1 & ,p5sions ,a ,,bill ,to am5d ! ,public ,heal? ,s]vice ,act to coord9ate ,f$]al cong5ital he>t disease rese>* & surveillance ef=ts & to improve public education & aw>5ess ( cong5ital he>t disease1 & = o!r purposes4 #a4 ,%ort title ,?is ,act may be cit$ z ! ,cong5ital ,he>t ,futures ,reau?orization ,act ( #bjag4 #b4 ,national cong5ital he>t disease cohort /udy1 surveillance1 & aw>5ess campaign ,section #cii,v-#b ( ! ,public ,heal? ,s]vice ,act 7#db ,u4,s4,c4 #bhj;g-#ac7 is am5d$-- 7#a7 by am5d+ ! section head+ to read z foll[s3 ,national cong5ital he>t disease cohort /udy1 surveillance sy/em1 & aw>5ess campaign2 7#b7 by am5d+ subsection 7a7 to read z foll[s3 7a7 ,9 g5]al 7#a7 ,activities ,! ,secret>y %all-- 7,a7 enhance & exp& rese>* & surveillance infra/ructure to /udy & track ! epidemiology ( cong5ital he>t disease 79 ?is section ref]r$ to z ,,*d7 across ! lifespan2 & 7,b7 plan & implem5t a public outrea* & education campaign reg>d+ ,,*d across ! lifespan4 7#b7 ,grants ,! ,secret>y may aw>d grants to eligible entities to c>ry out ! activities describ$ 9 subsections 7b71 7c71 & 7d74 2 7#c7 9 subsection 7b7-- 7,a7 9 ! head+1 by /rik+ ,purpose & ins]t+ ,national ,cong5ital ,he>t ,disease ,surveillance ,sy/em2 & 7,b7 by /rik+ ,! purpose ( ! ,cong5ital ,he>t ,disease ,surveillance ,sy/em %all be to facilitate & ins]t+ ! foll[+3 7#a7 ,9 g5]al ,! ,secret>y %all e/abli% a ,cong5ital ,he>t ,disease ,surveillance ,sy/em = ! purpose ( facilitat+ 2 7#d7 9 subsection 7c7-- 7,a7 9 p>agraph 7#b71 by r$esignat+ subp>agraphs 7,a7 ?r\gh 7,e7 z clauses 7i7 ?r\gh 7v71 respectively1 & adju/+ ! m>g9s accord+ly2 7,b7 by r$esignat+ p>agraphs 7#a7 ?r\gh 7#c7 z subp>agraphs 7,a7 ?r\gh 7,c71 respectively1 & adju/+ ! m>g9s accord+ly2 & 7,c7 by r$esignat+ su* subsection 7c7 z p>agraph 7#b7 ( subsection 7b7 & adju/+ ! m>g9 accord+ly2 7#e7 by /rik+ subsections 7d7 & 7e7 & ins]t+ ! foll[+3 7c7 ,national cong5ital he>t disease cohort /udy 7#a7 ,9 g5]al ,! ,secret>y1 act+ ?r\gh ! ,director ( ! ,c5t]s = ,disease ,control & ,prev5tion1 %all plan1 develop1 implem5t1 & submit annual reports to ! ,congress on rese>* & surveillance activities ( ! ,c5t]s = ,disease ,control & ,prev5tion1 includ+ a cohort /udy to improve und]/&+ ( ! epidemiology ( ,,*d across ! lifespan1 f bir? to adul?ood1 ) p>ticul> int]e/ 9 ! foll[+3 7,a7 ,heal? c>e utilization & natural hi/ory ( individuals affect$ 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 ,,*d :i* may include ! consid]ation ( pr5atal exposures2 & 7,c7 incorporate behavioral1 emotional1 & educational outcomes ( ^? affect$ by ,,*d4 7#c7 ,public access ,subject to appropriate protections ( p]sonal in=mation1 includ+ protections requir$ "u p>agraph 7#d71 data g5]at$ f ! /udy "u ?is subsection & ?r\gh ! ,cong5ital ,he>t ,disease ,surveillance ,sy/em "u subsection 7b7 %all be made available = purposes ( ,,*d rese>* & to ! public4 7#d7 ,pati5t privacy ,! ,secret>y %all ensure t ! /udy "u ?is subsection & ! ,cong5ital ,he>t ,disease ,surveillance ,sy/em "u subsection 7b7 are 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 7d7 ,cong5ital he>t disease aw>5ess campaign 7#a7 ,9 g5]al ,! ,secret>y1 act+ ?r\gh ! ,director ( ! ,c5t]s = ,disease ,control & ,prev5tion1 %all e/abli% & implem5t an aw>5ess1 outrea*1 & education campaign reg>d+ ,,*d across ! lifespan4 ,! in=mation express$ ?r\gh su* campaign may-- 7,a7 emphasize ! preval5ce ( ,,*d2 7,b7 id5tify ,,*d z a condition t affects ^? diagnos$ ?r\gh\t _! lives2 & 7,c7 promote ! ne$ = p$iatric1 adolesc5t1 & adult individuals ) ,,*d to seek & ma9ta9 lifelong1 specializ$ c>e4 7#b7 ,p]missible activities ,! campaign "u ?is subsection may-- 7,a7 utilize collaborations or p>tn]%ips ) o!r ag5cies1 heal? c>e pr(essionals1 & pati5t advocacy organizations t specialize 9 ! ne$s ( individuals ) ,,*d2 & 7,b7 include ! use ( pr9t1 film1 or electronic mat]ials di/ribut$ via television1 radio1 ,int]net1 or o!r comm]cial m>ket+ v5ues4 2 7#f7 by r$esignat+ subsection 7f7 z subsection 7e72 & 7#g7 by add+ at ! end ! foll[+3 7f7 ,au?orization ( appropriations ,to c>ry out ?is section1 !re are au?oriz$ to be appropriat$ su* sums z may be necess>y = ea* ( fiscal ye>s #bjag ?r\gh #bjba4 4 #c4 ,cong5ital he>t disease rese>* ,section #dbe ( ! ,public ,heal? ,s]vice ,act 7#db ,u4,s4,c4 #bhe;b-#h7 is am5d$ by add+ ! end ! foll[+3 7d7 ,report f ,,nih ,n lat] ?an #a 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