,i  #aad? ,,congress  #a/ ,session  ,h4 
,r4 #bcac  ,,9 ,,! ,,h\se ,,(           
,,repres5tatives  ,may #ac1 #bjae ,mr4  
,smi? ( ,new ,j]sey introduc$ ! foll[+  
bill2 :i* 0 ref]r$ to ! ,committee on   
,en]gy & ,comm]ce  ,a ,,bill  ,to am5d !
 ,public ,heal? ,s]vice ,act to enhance 
& exp& infra/ructure & activities to    
track ! epidemiology ( hydrocephalus1 & 
= o!r purposes4  #a4 ,%ort title ,?is   
,act may be cit$ z ! ,advanc+ ,rese>* = 
,hydrocephalus ,act ( #bjae4  #b4       
,national hydrocephalus surveillance    
sy/em ,"p ,p ( title ,,iii ( ! ,public  
,heal? ,s]vice ,act 7#db ,u4,s4,c4      
#bhj;g et seq47 is am5d$ by add+ at !   
end ! foll[+3  #cii,v-#f4 ,surveillance 
( hydrocephalus  7a7 ,9 g5]al ,!        
,secret>y1 act+ ?r\gh ! ,director ( !   
,c5t]s = ,disease ,control & ,prev5tion1
 %all-- 7#a7 enhance & exp&             
infra/ructure & activities to track !   
epidemiology ( hydrocephalus2 &  7#b7   
incorporate in=mation obta9$ ?r\gh su*  
activities into a /ati/ically s\nd1     

sci5tifically cr$ible1 integrat$        
surveillance sy/em1 to be kn[n z !      
,national ,hydrocephalus ,surveillance  
,sy/em4  7b7 ,rese>* ,! ,secret>y %all  
ensure t ! ,national ,hydrocephalus     
,surveillance ,sy/em is design$ 9 a     
mann] t facilitates fur!r rese>* on     
hydrocephalus4  7c7 ,cont5t ,9 c>ry+ out
 subsection 7a71 ! ,secret>y-- 7#a7 %all
 provide = ! collection & /orage (      
in=mation on ! incid5ce & preval5ce (   
hydrocephalus 9 ! ,unit$ ,/ates2  7#b7  
to ! ext5t practicable1 %all provide = !
 collection & /orage ( o!r available    
in=mation on hydrocephalus1 su* z       
in=mation conc]n+-- 7,a7 demographics & 
o!r in=mation associat$ or possibly     
associat$ ) hydrocephalus1 su* z age1   
race1 e?nicity1 sex1 geographic         
location1 & family hi/ory2 &  7,b7 any  
*anges ov] "t ) respect to ! incid5ce & 
preval5ce ( hydrocephalus 9 *ildr5 &    
adults2  7#c7 may provide = ! collection
 & /orage ( in=mation relevant to       
analysis on hydrocephalus su* z         

in=mation conc]n+--  7,a7 ! epidemiology
 ( ! condition2  7,b7 ! hi/ory (        
cong5ital & acquir$ hydrocephalus2  7,c7
 ! detection1 managem5t1 & treatm5t     
approa*es = ! condition2  7,d7 ! ev5ts  
or influ5ces t occur dur+ fetal         
developm5t1 or g5etic abnormalities t   
lead to ! condition2 &  7,e7 !          
developm5t ( outcomes measures2 &  7#d7 
may address issues id5tifi$ dur+ !      
consultation process "u subsection 7d74 
7d7 ,consultation ,9 c>ry+ out ?is      
section1 ! ,secret>y %all consult )     
individuals ) appropriate exp]tise1     
includ+-- 7#a7 epidemiologi/s ) exp]i5ce
 9 disease surveillance or regi/ries2   
7#b7 repres5tatives ( national volunt>y 
heal? associations t-- 7,a7 focus on    
hydrocephalus2 &  7,b7 h demon/rat$     
exp]i5ce 9 rese>*1 c>e1 or pati5t       
s]vices2  7#c7 heal? in=mation te*nology
 exp]ts or o!r in=mation managem5t      
speciali/s2  7#d7 cl9icians ) exp]tise 9
 hydrocephalus diseases2 &  7#e7 rese>* 
sci5ti/s ) exp]i5ce conduct+            

translational rese>* or utiliz+         
surveillance sy/ems = sci5tific rese>*  
purposes4  7e7 ,grants ,! ,secret>y may 
aw>d grants to1 or ent] into contracts  
or coop]ative agreem5ts )1 public or    
private nonpr(it entities to c>ry out   
activities "u ?is section4  7f7 ,public 
access ,subject to subsection 7g71 !    
,secret>y %all make in=mation & analysis
 9 ! ,national ,hydrocephalus           
,surveillance ,sy/em available1 z       
appropriate1 to ! public1 includ+       
rese>*]s4  7g7 ,privacy ,! ,secret>y    
%all ensure t privacy & security        
protections applicable to ! ,national   
,hydrocephalus ,surveillance ,sy/em are 
at lea/ z /r+5t z ! privacy & security  
protections "u ,,hipaa privacy &        
security law 7z def9$ 9 section         
#cjji7;a77#b774  7h7 ,report ,n lat] ?an
 #d ye>s aft] ! date ( ! enactm5t ( ?is 
section1 ! ,secret>y %all submit a      
report to ! ,congress conc]n+ !         
implem5tation ( ?is section4 ,su* report
 %all include in=mation on--  7#a7 !    

developm5t & ma9t5ance ( ! ,national    
,hydrocephalus ,surveillance ,sy/em2    
7#b7 ! type ( in=mation collect$ & /or$ 
9 ! ,national ,hydrocephalus            
,surveillance ,sy/em2  7#c7 ! use &     
availability ( su* in=mation1 includ+   
guidel9es = su* use2 &  7#d7 ! use &    
coord9ation ( databases t collect or    
ma9ta9 in=mation on ! ,national         
,hydrocephalus ,surveillance ,sy/em4  4