,,ii ,cal5d> ,no4 #eee #aae? ,,congress 
#b;d ,session  ,h4 ,r4 #abbb  ,,9 ,,!   
,,s5ate ,,( ,,! ,,unit$ ,,/ates         
,febru>y #bg1 #bjah,receiv$2 read twice 
& ref]r$ to ! ,committee on ,heal?1     
,education1 ,labor1 & ,p5sions  ,augu/  
#ae1 #bjah,report$ by ,mr4 ,alex&]1 ) an
 amendment,strike out all aft] ! enact+ 
clause & ins]t ! "p pr9t$ 9 italic  ,,an
 ,,act  ,to am5d ! ,public ,heal?       
,s]vice ,act to coord9ate ,f$]al        
cong5ital he>t disease rese>* ef=ts & to
 improve public education & aw>5ess (   
cong5ital he>t disease1 & = o!r         
purposes4  #a4 ,%ort title ,?is ,act may
 be cit$ 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 #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  #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$ su* sums z may be necess>y =
 ea* ( fiscal ye>s #bjai ?r\gh #bjbc4  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  ,augu/ #ae1       
#bjah,report$ ) an am5dm5t