#aac? ,,congress  #a/ ,session  ,h4 ,r4 
#bbe  ,,an ,,act  ,to am5d title ,,iv ( 
! ,public ,heal? ,s]vice ,act to provide
 = a ,national ,p$iatric ,rese>*        
,network1 includ+ ) respect to p$iatric 
r>e diseases or conditions4  #a4 ,%ort  
title ,?is ,act may be cit$ z !         
,national ,p$iatric ,rese>* ,network    
,act ( #bjac4  #b4 ,national ,p$iatric  
,rese>* ,network ,section #dji;,d ( !   
,public ,heal? ,s]vice ,act 7#db        
,u4,s4,c4 #bhd;h2 relat+ to ! ,p$iatric 
,rese>* ,initiative7 is am5d$--  7#a7 by
 r$esignat+ subsection 7d7 z subsection 
7f72 &  7#b7 by ins]t+ aft] subsection  
7c7 ! foll[+3  7d7 ,national ,p$iatric  
,rese>* ,network  7#a7 ,network ,9 c>ry+
 out ! ,initiative1 ! ,director ( ,,nih1
 act+ ?r\gh ! ,director ( ! ,eunice     
,k5n$y ,%riv] ,national ,in/itute (     
,*ild ,heal? & ,human ,developm5t & 9   
collaboration ) o!r appropriate national
 rese>* in/itutes & national c5t]s t    
c>ry out activities involv+ p$iatric    
rese>*1 may provide = ! e/abli%m5t ( a  

,national ,p$iatric ,rese>* ,network    
consi/+ ( ! p$iatric rese>* consortia   
receiv+ aw>ds "u p>agraph 7#b74  7#b7   
,p$iatric rese>* consortia  7,a7 ,9     
g5]al ,! ,director ( ! ,in/itute may    
aw>d fund+1 includ+ ?r\gh grants1       
contracts1 or o!r me*anisms1 to public  
or private nonpr(it entities--  7i7 =   
plann+1 e/abli%+1 or /r5g!n+ p$iatric   
rese>* consortia2 &  7ii7 = provid+     
basic op]at+ support = su* consortia1   
includ+ ) respect to--  7,i7 basic1     
cl9ical1 behavioral1 or translational   
rese>* to meet unmet ne$s = p$iatric    
rese>*2 &  7,,ii7 tra9+ rese>*]s 9      
p$iatric rese>* te*niques 9 ord] to     
address unmet p$iatric rese>* ne$s4     
7,b7 ,rese>* ,! ,director ( ,,nih %all  
ensure t--  7i7 ea* consortium receiv+  
an aw>d "u subp>agraph 7,a7 conducts or 
supports at lea/ "o category ( rese>*   
describ$ 9 subp>agraph 7,a77ii77,i7 &   
collectively su* consortia conduct or   
support all su* categories ( rese>*2 &  
7ii7 "o or m su* consortia provide tra9+

 describ$ 9 subp>agraph 7,a77ii77,,ii74 
7,c7 ,numb] ( consortia ,! ,director (  
,,nih may make aw>ds "u ?is p>agraph = n
 m ?an #bj p$iatric rese>* consortia4   
7,d7 ,organization ( consortium ,ea*    
consortium receiv+ an aw>d "u           
subp>agraph 7,a7 %all--  7i7 be =m$ f a 
collaboration ( coop]at+ in/itutions2   
7ii7 be coord9at$ by a lead in/itution2 
7iii7 agree to dissem9ate sci5tific     
f9d+s1 includ+ f cl9ical trials1 rapidly
 & effici5tly2 &  7iv7 meet su*         
requirem5ts z may be prescrib$ by !     
,director ( ,,nih4  7,e7 ,supplem5t1 n  
supplant ,any support receiv$ by a      
consortium "u subp>agraph 7,a7 %all be  
us$ to supplem5t1 & n supplant1 o!r     
public or private support = activities  
au?oriz$ to be support$ "u ?is p>agraph4
  7,f7 ,duration ( support ,support ( a 
consortium "u subp>agraph 7,a7 may be = 
a p]iod ( n to exce$ #e ye>s4 ,su* p]iod
 may be ext5d$ at ! discretion ( !      
,director ( ,,nih4  7#c7 ,coord9ation ( 
consortia activities ,! ,director (     

,,nih %all--  7,a7 z appropriate1       
provide = ! coord9ation ( activities    
7includ+ ! ex*ange ( in=mation & regul> 
communication7 among ! consortia        
e/abli%$ pursuant to p>agraph 7#b72 &   
7,b7 require ! p]iodic prep>ation &     
submission to ! ,director ( reports on !
 activities ( ea* su* consortium4  7#d7 
,assi/ance ) regi/ries ,ea* consortium  
receiv+ an aw>d "u p>agraph 7#b77;,a7   
%all provide assi/ance to ! ,c5t]s =    
,disease ,control & ,prev5tion 9 !      
e/abli%m5t or expansion ( pati5t        
regi/ries & o!r surveillance sy/ems z   
appropriate & ^u reque/ by ! ,director (
 ! ,c5t]s4  7e7 ,rese>* on p$iatric r>e 
diseases or conditions  7#a7 ,9 g5]al ,9
 mak+ aw>ds "u subsection 7d77#b7 =     
p$iatric rese>* consortia1 ! ,director (
 ,,nih %all ensure t an appropriate     
numb] ( su* aw>ds are aw>d$ to su*      
consortia t agree to--  7,a7 focus      
prim>ily on p$iatric r>e diseases or    
conditions 7includ+ any su* diseases or 
conditions t are g5etic disord]s 7su* z 

sp9al muscul> atrophy & ,du*5ne muscul> 
dy/rophy7 or are relat$ to bir? defects 
7su* z ,d[n syndrome & fragile ,x772 &  
7,b7 conduct or coord9ate "o or m       
multisite cl9ical trials ( !rapies =1 or
 approa*es to1 ! prev5tion1 diagnosis1  
or treatm5t ( "o or m p$iatric r>e      
diseases or conditions4  7#b7 ,data     
coord9at+ c5t]  7,a7 ,e/abli%m5t ,9     
connection ) support ( consortia        
describ$ 9 p>agraph 7#a71 ! ,director ( 
,,nih %all e/abli% a data coord9at+ c5t]
 = ! foll[+ purposes3  7i7 ,to di/ribute
 ! sci5tific f9d+s ref]r$ to 9 p>agraph 
7#a77;,c74  7ii7 ,to provide assi/ance 9
 ! design & conduct ( collaborative     
rese>* projects & ! managem5t1 analysis1
 & /orage ( data associat$ ) su*        
projects4  7iii7 ,to organize & conduct 
multisite monitor+ activities4  7,b7    
,report+ ,! ,director ( ,,nih %all--    
7i7 require ! data coord9at+ c5t]       
e/abli%$ "u subp>agraph 7,a7 to provide 
regul> reports to ! ,director ( ,,nih & 
! ,commission] ( ,food & ,drugs on      

rese>* conduct$ by consortia describ$ 9 
p>agraph 7#a71 includ+ in=mation on     
enrollm5t 9 cl9ical trials & !          
allocation ( res\rces ) respect to su*  
rese>*2 &  7ii7 z appropriate1          
incorporate in=mation report$ "u clause 
7i7 into ! ,director's bi5nial reports  
"u section #djc4  4  ,pass$ ! ,h\se (   
,repres5tatives ,febru>y #d1            
#bjac4;,cl]k4