,9 ! ,s5ate ( ! ,unit$ ,/ates1  ,decemb]
 #ab1 #bjah4  ,am5dm5t3  ,t ! bill f !  
,h\se ( ,repres5tatives 7,h4,r4 #abbb7  
entitl$ ,an ,act to am5d ! ,public      
,heal? ,s]vice ,act to coord9ate ,f$]al 
cong5ital he>t disease rese>* ef=ts & to
 improve public education & aw>5ess (   
cong5ital he>t disease1 & = o!r         
purposes41 d pass ) ! foll[+ ,/rike all 
aft] ! enact+ clause & ins]t ! foll[+3  
#a4 ,%ort title ,?is ,act may be cit$ z 
! ,cong5ital ,he>t ,futures             
,reau?orization ,act ( #bjag4  #b4      
,national cong5ital he>t disease rese>*1
 surveillance1 & aw>5ess ,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 %all1 z appropriate-- 7#a7   
enhance & exp& rese>* & data collection 
ef=ts relat$ to cong5ital he>t disease1 
includ+ to /udy & track ! epidemiology (
 cong5ital he>t disease to und]/& heal? 

outcomes = individuals ) cong5ital he>t 
disease across all ages2  7#b7 conduct  
activities to improve public aw>5ess (1 
& education relat$ to1 cong5ital he>t   
disease1 includ+ c>e ( individuals ) su*
 disease2 &  7#c7 aw>d grants to        
entities to und]take ! activities       
describ$ 9 ?is section4  7b7 ,activities
  7#a7 ,9 g5]al ,! ,secret>y %all c>ry  
out activities1 includ+1 z appropriate1 
?r\gh a national cohort /udy & a        
nationally-repres5tative1               
population-bas$ surveillance sy/em1 to  
improve ! und]/&+ ( ! epidemiology (    
cong5ital he>t disease 9 all age gr\ps1 
) p>ticul> att5tion to-- 7,a7 ! incid5ce
 & preval5ce ( cong5ital he>t disease 9 
! ,unit$ ,/ates2  7,b7 causation & risk 
factors associat$ )1 & natural hi/ory (1
 cong5ital he>t disease2  7,c7 heal? c>e
 utilization by individuals ) cong5ital 
he>t disease2  7,d7 demographic factors 
associat$ ) cong5ital he>t disease1 su* 
z age1 race1 e?nicity1 sex1 & family    
hi/ory ( individuals :o are diagnos$ ) !

 disease2 &  7,e7 evid5ce-bas$ practices
 relat$ to c>e & treatm5t = individuals 
) cong5ital he>t disease4  7#b7         
,p]missible consid]ations ,9 c>ry+ out !
 activities "u ?is section1 ! ,secret>y 
may1 z appropriate-- 7,a7 collect data  
on ! heal? outcomes1 includ+ behavioral 
& m5tal heal? outcomes1 ( a div]se      
population ( individuals ( all ages )   
cong5ital he>t disease1 su* t analysis (
 ! outcomes w in=m evid5ce-bas$         
practices = individuals ) cong5ital he>t
 disease2 &  7,b7 consid] heal?         
disp>ities among individuals ) cong5ital
 he>t disease1 :i* may include !        
consid]ation ( pr5atal exposures4  7c7  
,aw>5ess campaign ,! ,secret>y may c>ry 
out aw>5ess & educational activities    
relat$ to cong5ital he>t disease 9      
individuals ( all ages1 :i* may include 
in=mation = pati5ts1 family memb]s1 &   
heal? c>e provid]s1 on topics su* z !   
preval5ce ( su* disease1 ! effect ( su* 
disease on individuals ( all ages1 & !  
importance ( long-t]m1 specializ$ c>e = 

individuals ) su* disease4  7d7 ,public 
access ,! ,secret>y %all ensure t1      
subject to subsection 7e71 in=mation    
collect$ "u ?is section is made         
available1 z appropriate1 to ! public1  
includ+ rese>*]s4  7e7 ,pati5t privacy  
,! ,secret>y %all ensure t ! data &     
in=mation collect$ "u ?is section are   
made available 9 a mann] t1 at a m9imum1
 protects p]sonal privacy to ! ext5t    
requir$ by applicable ,f$]al & ,/ate    
law4  7f7 ,eligibility = grants ,to be  
eligible to receive a grant "u          
subsection 7a77#c71 an entity %all--    
7#a7 be a public or private nonpr(it    
entity ) specializ$ exp]i5ce 9 cong5ital
 he>t disease2 &  7#b7 submit to !      
,secret>y an application at su* "t1 9   
su* mann]1 & conta9+ su* in=mation z !  
,secret>y may require4  7g7             
,au?orization ( appropriations ,to c>ry 
out ?is section1 !re are au?oriz$ to be 
appropriat$ #aj1jjj1jjj = ea* ( fiscal  
ye>s #bjbj ?r\gh #bjbd4  4  #c4 ,report 
,n lat] ?an #c ye>s aft] ! date (       

enactm5t ( ! ,cong5ital ,he>t ,futures  
,reau?orization ,act ( #bjag1 !         
,secret>y ( ,heal? & ,human ,s]vices    
%all submit to ! ,committee on ,heal?1  
,education1 ,labor1 & ,p5sions ( !      
,s5ate & ! ,committee on ,en]gy &       
,comm]ce ( ! ,h\se ( ,repres5tatives a  
report summ>iz+ any activities c>ri$ out
 pursuant to section #cii,v-#b ( !      
,public ,heal? ,s]vice ,act 7z am5d$ by 
section #b71 includ+ plann$ activities1 
& a summ>y ( any rese>* f9d+s & ongo+   
rese>* ef=ts1 gaps1 & areas ( greate/   
ne$ )9 ! ,dep>tm5t ( ,heal? & ,human    
,s]vices reg>d+ cong5ital he>t disease 9
 pati5ts ( all ages4  ,secret>y