,,ii  #aad? ,,congress  #a/ ,session    
,s4 #bbdh  ,,9 ,,! ,,s5ate ,,( ,,!      
,,unit$ ,,/ates  ,novemb] #e1 #bjae,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$]al        
cong5ital he>t disease rese>* ef=ts & to
 improve public education & aw>5ess (   
cong5ital he>t disease1 & = o!r         
purposes4  #a4 ,%ort title ,?is ,act may
 be cit$ z ! ,cong5ital ,he>t ,futures  
,reau?orization ,act ( #bjae4  #b4      
,national cong5ital he>t disease cohort 
/udy & aw>5ess campaign ,section #cja ( 
! ,public ,heal? ,s]vice ,act 7#db      
,u4,s4,c4 #bda7 is am5d$ by add+ at !   
end ! foll[+--  7f7 ,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 surveillance & rese>*      
activities ( ! ,c5t]s = ,disease        
,control & ,prev5tion1 includ+ a cohort 
/udy to improve und]/&+ ( ! epidemiology
 ( cong5ital he>t disease 7ref]r$ to 9  
?is subsection & subsection 7g7 z ,,*d7 
across ! lifespan1 f bir? to adul?ood1 )
 p>ticul> int]e/ 9 ! foll[+3  7,a7      
,heal? c>e utilization & natural hi/ory 
( ^? 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  
p>agraph 7#d71 ! data g5]at$ f ! /udies 
"u ?is subsection %all be made available
 to ,,*d rese>*]s subject to appropriate
 privacy protections1 & aggregate data f
 su* /udies %all be made available to ! 
public4  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  7g7       
,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 t    
,,*d is ! mo/ preval5t bir? defect2     
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 %all-- 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  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 ( #bjae1 !         
,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