,i  #aadth ,,congress  #ast ,session    
,h4 ,r4 #bcac  ,,in ,,the ,,house ,,of  
,,representatives  ,may #ac1 #bjae ,mr4 
,smith of ,new ,jersey introduced the   
following bill2 which was referred to   
the ,committee on ,energy and ,commerce 
,a ,,bill  ,to amend the ,public ,health
 ,service ,act to enhance and expand    
infrastructure and activities to track  
the epidemiology of hydrocephalus1 and  
for other purposes4  #a4 ,short title   
,this ,act may be cited as the          
,advancing ,research for ,hydrocephalus 
,act of #bjae4  #b4 ,national           
hydrocephalus surveillance system ,part 
,p of title ,,iii of the ,public ,health
 ,service ,act 7#db ,u4,s4,c4 #bhj;g et 
seq47 is amended by adding at the end   
the following3  #cii,v-#f4 ,surveillance
 of hydrocephalus  7a7 ,in general ,the 
,secretary1 acting through the ,director
 of the ,centers for ,disease ,control  
and ,prevention1 shall-- 7#a7 enhance   
and expand infrastructure and activities
 to track the epidemiology of           

hydrocephalus2 and  7#b7 incorporate    
information obtained through such       
activities into a statistically sound1  
scientifically credible1 integrated     
surveillance system1 to be known as the 
,national ,hydrocephalus ,surveillance  
,system4  7b7 ,research ,the ,secretary 
shall ensure that the ,national         
,hydrocephalus ,surveillance ,system is 
designed in a manner that facilitates   
further research on hydrocephalus4  7c7 
,content ,in carrying out subsection    
7a71 the ,secretary-- 7#a7 shall provide
 for the collection and storage of      
information on the incidence and        
prevalence of hydrocephalus in the      
,united ,states2  7#b7 to the extent    
practicable1 shall provide for the      
collection and storage of other         
available information on hydrocephalus1 
such as information concerning-- 7,a7   
demographics and other information      
associated or possibly associated with  
hydrocephalus1 such as age1 race1       
ethnicity1 sex1 geographic location1 and

 family history2 and  7,b7 any changes  
over time with respect to the incidence 
and prevalence of hydrocephalus in      
children and adults2  7#c7 may provide  
for the collection and storage of       
information relevant to analysis on     
hydrocephalus such as information       
concerning--  7,a7 the epidemiology of  
the condition2  7,b7 the history of     
congenital and acquired hydrocephalus2  
7,c7 the detection1 management1 and     
treatment approaches for the condition2 
7,d7 the events or influences that occur
 during fetal development1 or genetic   
abnormalities that lead to the          
condition2 and  7,e7 the development of 
outcomes measures2 and  7#d7 may address
 issues identified during the           
consultation process under subsection   
7d74  7d7 ,consultation ,in carrying out
 this section1 the ,secretary shall     
consult with individuals with           
appropriate expertise1 including-- 7#a7 
epidemiologists with experience in      
disease surveillance or registries2     

7#b7 representatives of national        
voluntary health associations that--    
7,a7 focus on hydrocephalus2 and  7,b7  
have demonstrated experience in         
research1 care1 or patient services2    
7#c7 health information technology      
experts or other information management 
specialists2  7#d7 clinicians with      
expertise in hydrocephalus diseases2 and
  7#e7 research scientists with         
experience conducting translational     
research or utilizing surveillance      
systems for scientific research         
purposes4  7e7 ,grants ,the ,secretary  
may award grants to1 or enter into      
contracts or cooperative agreements     
with1 public or private nonprofit       
entities to carry out activities under  
this section4  7f7 ,public access       
,subject to subsection 7g71 the         
,secretary shall make information and   
analysis in the ,national ,hydrocephalus
 ,surveillance ,system available1 as    
appropriate1 to the public1 including   
researchers4  7g7 ,privacy ,the         

,secretary shall ensure that privacy and
 security protections applicable to the 
,national ,hydrocephalus ,surveillance  
,system are at least as stringent as the
 privacy and security protections under 
,,hipaa privacy and security law 7as    
defined in section #cjji7;a77#b774  7h7 
,report ,not later than #d years after  
the date of the enactment of this       
section1 the ,secretary shall submit a  
report to the ,congress concerning the  
implementation of this section4 ,such   
report shall include information on--   
7#a7 the development and maintenance of 
the ,national ,hydrocephalus            
,surveillance ,system2  7#b7 the type of
 information collected and stored in the
 ,national ,hydrocephalus ,surveillance 
,system2  7#c7 the use and availability 
of such information1 including          
guidelines for such use2 and  7#d7 the  
use and coordination of databases that  
collect or maintain information on the  
,national ,hydrocephalus ,surveillance  
,system4  4