,in the ,senate of the ,united ,states1 
,december #ab1 #bjah4  ,amendment3      
,that the bill from the ,house of       
,representatives 7,h4,r4 #abbb7 entitled
 ,an ,act to amend the ,public ,health  
,service ,act to coordinate ,federal    
congenital heart disease research       
efforts and to improve public education 
and awareness of congenital heart       
disease1 and for other purposes41 do    
pass with the following ,strike all     
after the enacting clause and insert the
 following3 #a4 ,short title ,this ,act 
may be cited as the ,congenital ,heart  
,futures ,reauthorization ,act of #bjag4
  #b4 ,national congenital heart disease
 research1 surveillance1 and awareness  
,section #cii,v-#b of the ,public       
,health ,service ,act 7#db ,u4,s4,c4    
#bhj;g-#ac7 is amended to read as       
follows3  #cii,v-#b4 ,national          
congenital heart disease research1      
surveillance1 and awareness  7a7 ,in    
general ,the ,secretary shall1 as       
appropriate-- 7#a7 enhance and expand   

research and data collection efforts    
related to congenital heart disease1    
including to study and track the        
epidemiology of congenital heart disease
 to understand health outcomes for      
individuals with congenital heart       
disease across all ages2  7#b7 conduct  
activities to improve public awareness  
of1 and education related to1 congenital
 heart disease1 including care of       
individuals with such disease2 and  7#c7
 award grants to entities to undertake  
the activities described in this        
section4  7b7 ,activities  7#a7 ,in     
general ,the ,secretary shall carry out 
activities1 including1 as appropriate1  
through a national cohort study and a   
nationally-representative1              
population-based surveillance system1 to
 improve the understanding of the       
epidemiology of congenital heart disease
 in all age groups1 with particular     
attention to-- 7,a7 the incidence and   
prevalence of congenital heart disease  
in the ,united ,states2  7,b7 causation 

and risk factors associated with1 and   
natural history of1 congenital heart    
disease2  7,c7 health care utilization  
by individuals with congenital heart    
disease2  7,d7 demographic factors      
associated with congenital heart        
disease1 such as age1 race1 ethnicity1  
sex1 and family history of individuals  
who are diagnosed with the disease2 and 
7,e7 evidence-based practices related to
 care and treatment for individuals with
 congenital heart disease4  7#b7        
,permissible considerations ,in carrying
 out the activities under this section1 
the ,secretary may1 as appropriate--    
7,a7 collect data on the health         
outcomes1 including behavioral and      
mental health outcomes1 of a diverse    
population of individuals of all ages   
with congenital heart disease1 such that
 analysis of the outcomes will inform   
evidence-based practices for individuals
 with congenital heart disease2 and     
7,b7 consider health disparities among  
individuals with congenital heart       

disease1 which may include the          
consideration of prenatal exposures4    
7c7 ,awareness campaign ,the ,secretary 
may carry out awareness and educational 
activities related to congenital heart  
disease in individuals of all ages1     
which may include information for       
patients1 family members1 and health    
care providers1 on topics such as the   
prevalence of such disease1 the effect  
of such disease on individuals of all   
ages1 and the importance of long-term1  
specialized care for individuals with   
such disease4  7d7 ,public access ,the  
,secretary shall ensure that1 subject to
 subsection 7e71 information collected  
under this section is made available1 as
 appropriate1 to the public1 including  
researchers4  7e7 ,patient privacy ,the 
,secretary shall ensure that the data   
and information collected under this    
section are made available in a manner  
that1 at a minimum1 protects personal   
privacy to the extent required by       
applicable ,federal and ,state law4  7f7

 ,eligibility for grants ,to be eligible
 to receive a grant under subsection    
7a77#c71 an entity shall-- 7#a7 be a    
public or private nonprofit entity with 
specialized experience in congenital    
heart disease2 and  7#b7 submit to the  
,secretary an application at such time1 
in such manner1 and containing such     
information as the ,secretary may       
require4  7g7 ,authorization of         
appropriations ,to carry out this       
section1 there are authorized to be     
appropriated #aj1jjj1jjj for each of    
fiscal years #bjbj through #bjbd4  4    
#c4 ,report ,not later than #c years    
after the date of enactment of the      
,congenital ,heart ,futures             
,reauthorization ,act of #bjag1 the     
,secretary of ,health and ,human        
,services shall submit to the ,committee
 on ,health1 ,education1 ,labor1 and    
,pensions of the ,senate and the        
,committee on ,energy and ,commerce of  
the ,house of ,representatives a report 
summarizing any activities carried out  

pursuant to section #cii,v-#b of the    
,public ,health ,service ,act 7as       
amended by section #b71 including       
planned activities1 and a summary of any
 research findings and ongoing research 
efforts1 gaps1 and areas of greatest    
need within the ,department of ,health  
and ,human ,services regarding          
congenital heart disease in patients of 
all ages4  ,secretary