,,ii  #aadth ,,congress  #ast ,session  
,s4 #bbdh  ,,in ,,the ,,senate ,,of     
,,the ,,united ,,states  ,november #e1  
#bjae,mr4 ,durbin 7for himself and ,mr4 
,casey7 introduced the following bill2  
which was read twice and referred to the
 ,committee on ,health1 ,education1     
,labor1 and ,pensions  ,a ,,bill  ,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 
purposes4  #a4 ,short title ,this ,act  
may be cited as the ,congenital ,heart  
,futures ,reauthorization ,act of #bjae4
  #b4 ,national congenital heart disease
 cohort study and awareness campaign    
,section #cja of the ,public ,health    
,service ,act 7#db ,u4,s4,c4 #bda7 is   
amended by adding at the end the        
following--  7f7 ,national congenital   
heart disease cohort study  7#a7 ,in    
general ,the ,secretary1 acting through 
the ,director of the ,centers for       

,disease ,control and ,prevention1 shall
 plan1 develop1 implement1 and submit   
annual reports to the ,congress on      
surveillance and research activities of 
the ,centers for ,disease ,control and  
,prevention1 including a cohort study to
 improve understanding of the           
epidemiology of congenital heart disease
 7referred to in this subsection and    
subsection 7g7 as ,,chd7 across the     
lifespan1 from birth to adulthood1 with 
particular interest in the following3   
7,a7 ,health care utilization and       
natural history of those affected by    
,,chd4  7,b7 ,demographic factors       
associated with ,,chd1 such as age1     
race1 ethnicity1 gender1 and family     
history of individuals who are diagnosed
 with the disease4  7,c7 ,outcome       
measures1 such that analysis of the     
outcome measures will allow derivation  
of evidence-based best practices and    
guidelines for ,,chd patients4  7#b7    
,permissible considerations ,the study  
under this subsection may-- 7,a7 gather 

data on the health outcomes of a diverse
 population of those affected by ,,chd2 
7,b7 consider health disparities among  
those affected by ,,chd which may       
include the consideration of prenatal   
exposures2 and  7,c7 incorporate        
behavioral1 emotional1 and educational  
outcomes of those affected by ,,chd4    
7#c7 ,public access ,subject to         
paragraph 7#d71 the data generated from 
the studies under this subsection shall 
be made available to ,,chd researchers  
subject to appropriate privacy          
protections1 and aggregate data from    
such studies shall be made available to 
the public4  7#d7 ,patient privacy ,the 
,secretary shall ensure that the study  
under this subsection is carried out in 
a manner that complies with the         
requirements applicable to a covered    
entity under the regulations promulgated
 pursuant to section #bfd7;c7 of the    
,health ,insurance ,portability and     
,accountability ,act of #aiif4  7g7     
,congenital heart disease awareness     

campaign  7#a7 ,in general ,the         
,secretary1 acting through the ,director
 of the ,centers for ,disease ,control  
and ,prevention1 shall establish and    
implement an awareness1 outreach1 and   
education campaign regarding ,,chd      
across the lifespan4 ,the information   
expressed through such campaign may--   
7,a7 emphasize that ,,chd is the most   
prevalent birth defect2  7,b7 identify  
,,chd as a condition that affects those 
diagnosed throughout their lives2 and   
7,c7 promote the need for pediatric1    
adolescent1 and adult individuals with  
,,chd to seek and maintain lifelong1    
specialized care4  7#b7 ,permissible    
activities ,the campaign under this     
subsection shall-- 7,a7 utilize         
collaborations or partnerships with     
other agencies1 health care             
professionals1 and patient advocacy     
organizations that specialize in the    
needs of individuals with ,,chd2 and    
7,b7 include the use of print1 film1 or 
electronic materials distributed via    

television1 radio1 ,internet1 or other  
commercial marketing venues4  4  #c4    
,congenital heart disease research      
,section #dbe of the ,public ,health    
,service ,act 7#db ,u4,s4,c4 #bhe;b-#h7 
is amended by adding the end the        
following3  7d7 ,report from ,,nih ,not 
later than #a year after the date of    
enactment of the ,congenital ,heart     
,futures ,reauthorization ,act of #bjae1
 the ,director of ,,nih1 acting through 
the ,director of the ,institute1 shall  
provide a report to ,congress--  7#a7   
outlining the ongoing research efforts  
of the ,national ,institutes of ,health 
regarding congenital heart disease2 and 
7#b7 identifying-- 7,a7 future plans for
 research regarding congenital heart    
disease2 and  7,b7 the areas of greatest
 need for such research4  4