,i  #aacth ,,congress  #ast ,session    
,h4 ,r4 #ffj  ,,in ,,the ,,house ,,of   
,,representatives  ,february #ac1 #bjac 
,ms4 ,lee of ,california introduced the 
following bill2 which was referred to   
the ,committee on ,energy and ,commerce 
,a ,,bill  ,to amend the ,public ,health
 ,service ,act to create a ,national    
,neuromyelitis ,optica ,consortium to   
provide grants and coordinate research  
with respect to the causes of1 and risk 
factors associated with1 neuromyelitis  
optica1 and for other purposes4  #a4    
,short title ,this ,act may be cited as 
the ,neuromyelitis ,optica ,consortium  
,act4  #b4 ,findings ,congress finds the
 following3  7#a7 ,neuromyelitis optica 
7,,nmo7 is a devastating neurologic     
disease leading to blindness and        
paralysis4  7#b7 ,there are an estimated
 #aa1jjj patients with ,,nmo in the     
,united ,states4  7#c7 ,women are       
affected #g to #i times more than men1  
and a large proportion of ,,nmo patients
 are ,african-,american4  7#d7 ,the     

average age at diagnosis is #da years1  
but the range is broad and includes     
children as young as #b years of age and
 adults as old as #hi years of age4     
7#e7 ,,nmo incurs substantial costs for 
affected patients and their families4   
7#f7 ,the cause of ,,nmo is unknown1 but
 it is hypothesized to be autoimmune in 
nature4  7#g7 ,more than #ij percent of 
,,nmo patients will suffer recurrent    
disease and accumulate neurologic       
disability4  7#h7 ,because of their     
relatively low overall incidence1 orphan
 diseases like ,,nmo frequently do not  
receive sufficient attention and        
research funding4  7#i7 ,no single      
institution has a sufficient number of  
patients to independently conduct       
research that will adequately address   
the cause of ,,nmo4  7#aj7 ,there has   
been no comprehensive study analyzing   
all relevant clinical1 biological1 and  
epidemiological aspects of ,,nmo to     
identify potential risk factors and     
biomarkers for ,,nmo4  7#aa7 ,we can    

apply our understanding of ,,nmo to the 
study of other autoimmune diseases1     
including multiple sclerosis and        
systemic lupus erythematosus4  #c4      
,sense of congress ,it is the sense of  
,congress that there is a need--  7#a7  
to establish and coordinate a           
multicenter research effort based on    
collaboration between regional consortia
 and governmental and nongovernmental   
entities in order to--  7,a7            
comprehensively study the causes of     
,,nmo2 and  7,b7 identify potential     
biomarkers of disease activity2 and     
7#b7 to encourage a collaborative effort
 among academic medical centers with    
epidemiological study groups to gather  
comprehensive and detailed information  
for each patient enrolled in those      
groups1 in order to investigate         
environmental1 nutritional1 and genetic 
factors with respect to1 and the        
pathological and epidemiological        
characteristics of1 ,,nmo4  #d4         
,establishment of the national          

neuromyelitis optica consortium ,part ,b
 of title ,,iv of the ,public ,health   
,service ,act 7#db ,u4,s4,c4 #bhd et    
seq47 is amended by adding after section
 #dji;,j the following new section3     
#dji,k4 ,national neuromyelitis optica  
consortium  7a7 ,establishment of the   
national neuromyelitis optica consortium
  7#a7 ,in general ,not later than #a   
year after the date of the enactment of 
this section1 the ,secretary1 acting    
through the ,director of ,,nih1 and in  
coordination with the ,director of the  
,national ,institute on ,minority       
,health and ,health ,disparities1 shall 
establish1 administer1 and coordinate a 
,national ,neuromyelitis ,optica        
,consortium 7in this section referred to
 as the ,,nno ,consortium7 for the      
purposes described in paragraph 7#b74   
7#b7 ,purposes ,the purposes of the     
,,nno ,consortium shall be the          
following3  7,a7 ,providing grants of   
not fewer than #e years duration to     
eligible consortia for the purpose of   

conducting research with respect to the 
causes of1 and the risk factors and     
biomarkers associated with1 ,,nmo4  7,b7
 ,assembling a panel of experts to      
provide1 with respect to research funded
 by the ,,nno ,consortium1 ongoing      
guidance and recommendations for the    
development of the following3  7i7 ,a   
common study design4  7ii7 ,standard    
protocols1 methods1 procedures1 and     
assays for collecting from individuals  
enrolled as study participants a minimum
 dataset that includes the following3   
7,i7 ,complete medical history4  7,,ii7 
,neurologic examination4  7,,iii7       
,biospecimens1 including blood1 spinal  
fluid1 ,,dna1 and ,,rna4  7,,iv7        
,radiological data including magnetic   
resonance imaging 7,,mri74  7iii7       
,specific analytical methods for        
examining data4  7iv7 ,provisions for   
consensus review of enrolled cases4  7v7
 ,an integrated data collection network4
  7,c7 ,designating a central laboratory
 to collect1 analyze1 and aggregate data

 with respect to research funded by the 
,,nno ,consortium and to make such data 
and analysis available to researchers4  
7#c7 ,eligible consortia ,to be eligible
 for a grant under this section1 a      
consortium shall demonstrate the        
following3  7,a7 ,the consortium has the
 capability to enroll as research       
participants a minimum of #be           
individuals with a diagnosis of ,,nmo   
from the consortium's designated        
catchment area4  7,b7 ,the designated   
catchment area of the consortium does   
not overlap with the designated         
catchment area of another consortium    
already receiving a grant under this    
section4  7#d7 ,report ,not later than  
#a year after the date of the enactment 
of this section and annually thereafter1
 the ,secretary1 acting through the     
,director of ,,nih1 shall submit to     
,congress a report with respect to the  
,,nno ,consortium1 to be made publicly  
available1 including a summary of       
research funded by the ,,nno ,consortium

 and a list of consortia receiving      
grants through the ,,nno ,consortium4   
,at the discretion of the ,secretary1   
such report may be combined with other  
similar or existing reports4  7#e7      
,authorization of appropriations  7,a7  
,in general ,there is authorized to be  
appropriated #be1jjj1jjj for each of    
fiscal years #bjad through #bjah1 to    
remain available until expended1 to     
carry out this section4  7,b7 ,sense of 
congress ,it is the sense of ,congress  
that funds appropriated to carry out    
this section should be in addition to   
funds otherwise available or            
appropriated to carry out the activities
 described in this section4  7b7        
,definitions ,for purposes of this      
section3  7#a7 ,catchment area ,the term
 catchment area means a defined area for
 which population data are available4   
7#b7 ,consortium ,the term consortium   
means a partnership of #b or more       
universities1 health care organizations1
 or government agencies1 or any         

combination of such entities1 serving a 
designated catchment area4  4