#aaith ,,congress  #b;d ,session  ,s4   
#ahch  ,,an ,,act  ,to amend the ,public
 ,health ,service ,act to authorize the 
,secretary of ,health and ,human        
,services to carry out a program of     
research1 training1 and investigation   
related to ,down syndrome1 and for other
 purposes4  #a4 ,short title ,this ,act 
may be cited as the ,de,ondra ,dixon    
,,include ,project ,act of #bjbf4  #b4  
,de,ondra ,dixon ,,include ,project     
,part ,b of title ,,iv of the ,public   
,health ,service ,act 7#db ,u4,s4,c4    
#bhd et seq47 is amended by adding at   
the end the following3  #dji,k4 ,down   
syndrome research  7a7 ,in general ,the 
,director of ,,nih shall carry out a    
program of research1 training1 and      
investigation related to ,down syndrome 
to be known as the ,i,nvestigation of   
,co-occurring conditions across the     
,lifespan to ,understand ,down syndrom,e
 ,project or the ,,include ,project4    
7b7 ,program elements ,the program under
 subsection 7a7 shall include-- 7#a7    

high-risk1 high-reward research on the  
effects of trisomy #ba on human         
development and health2  7#b7 promoting 
research for participants with ,down    
syndrome across the lifespan1 including 
cohort studies to facilitate improved   
understanding of ,down syndrome and     
co-occurring conditions and development 
of new interventions2  7#c7 expanding   
the number of clinical trials that are  
inclusive of1 or expressly for1         
participants with ,down syndrome1       
including novel biomedical and          
pharmacological interventions and other 
therapies designed to promote or enhance
 activities of daily living2  7#d7      
research on the biological mechanisms in
 individuals with ,down syndrome        
pertaining to structural1 functional1   
and behavioral anomalies and dysfunction
 as well as stunted growth2  7#e7       
supporting research to improve diagnosis
 and treatment of conditions            
co-occurring with ,down syndrome1       
including the identification of         

biomarkers related to risk factors1     
diagnosis1 and clinical research and    
therapeutics2  7#f7 research on the     
causes of increased prevalence1 and     
concurrent treatment1 of co-occurring   
conditions1 such as ,alzheimer's disease
 and related dementias and autoimmunity1
 in individuals with ,down syndrome2 and
  7#g7 research1 training1 and          
investigation on improving the quality  
of life of individuals with ,down       
syndrome and their families4  7c7       
,coordination2 prioritizing             
nonduplicative research ,the ,director  
of ,,nih shall ensure that-- 7#a7 the   
programs and activities of the          
institutes and centers of the ,national 
,institutes of ,health relating to ,down
 syndrome and co-occurring conditions   
are coordinated1 including through the  
,office of the ,director of ,,nih and   
priority-setting reviews conducted      
pursuant to section #djb7;b77#c72 and   
7#b7 such institutes and centers1       
prioritize1 as appropriate1 ,down       

syndrome research that does not         
duplicate existing research activities  
of the ,national ,institutes of ,health4
  7d7 ,consultation with stakeholders   
,in carrying out activities under this  
section1 the ,director of ,,nih shall1  
as appropriate and to the maximum extent
 feasible1 consult with relevant        
stakeholders1 including patient         
advocates1 to ensure that such          
activities take into consideration the  
needs of individuals with ,down         
syndrome4  7e7 ,biennial reports to     
,congress  7#a7 ,in general ,the        
,director of ,,nih shall submit1 on a   
biennial basis1 to the ,committee on    
,energy and ,commerce and the           
,subcommittee on ,labor1 ,health and    
,human ,services1 ,education1 and       
,related ,agencies of the ,committee on 
,appropriations of the ,house of        
,representatives and the ,committee on  
,health1 ,education1 ,labor1 and        
,pensions and the ,subcommittee on      
,labor1 ,health and ,human ,services1   

,education1 and ,related ,agencies of   
the ,committee on ,appropriations of the
 ,senate1 a report that catalogs the    
research conducted or supported under   
this section4  7#b7 ,contents ,each     
report under paragraph 7#a7 shall       
include-- 7,a7 identification of the    
institute or center involved2  7,b7 a   
statement of whether the research is or 
was being carried out directly by such  
institute or center or by multiple      
institutes and centers2 and  7,c7       
identification of any resulting         
real-world evidence that is or may be   
used for clinical research and medical  
care for patients with ,down syndrome4  
4  ,passed the ,senate ,august #f1      
#bjbf4,secretary