,,ii  #aaf? ,,congress  #b;d ,session   
,s4 #dehc  ,,9 ,,! ,,s5ate ,,( ,,!      
,,unit$ ,,/ates  ,septemb] #ae1         
#bjbj,mr4 ,m55dez 7= himself1 ,mr4 ,van 
,holl51 ,mrs4 ,gillibr&1 & ,mr4 ,murphy7
 introduc$ ! foll[+ bill2 :i* 0 read    
twice & ref]r$ to ! ,committee on       
,heal?1 ,education1 ,labor1 & ,p5sions  
,a ,,bill  ,to am5d ! ,public ,heal?    
,s]vice ,act to provide = ! expansion1  
int5sification1 & coord9ation ( !       
programs & activities ( ! ,national     
,in/itutes ( ,heal? ) respect to        
,t\rette syndrome4  #a4 ,%ort title ,?is
 ,act may be cit$ z ! ,collaborative    
,academic ,rese>* ,ef=ts = ,t\rette     
,syndrome ,act ( #bjbj or ! ,,c>e =     
,t\rette ,syndrome ,act ( #bjbj4  #b4   
,programs ( ! ,national ,in/itutes (    
,heal? relat+ to ,t\rette syndrome ,"p  
,b ( title ,,iv ( ! ,public ,heal?      
,s]vice ,act is am5d$ by ins]t+ aft]    
section #dji;,j 7#db ,u4,s4,c4 #bhdq7 ! 
foll[+3  #dji,k4 ,expansion1            
int5sification1 & coord9ation (         

activities ) respect to ,t\rette        
syndrome  7a7 ,9 g5]al ,! ,secret>y1    
act+ ?r\gh ! ,director ( ,,nih1 %all    
exp&1 int5sify1 & coord9ate ! programs &
 activities ( ! ,national ,in/itutes (  
,heal? ) respect to sci5tific & cl9ical 
rese>* on ,t\rette syndrome4  7b7 ,data 
collection  7#a7 ,sy/em ,9 c>ry+ out    
subsection 7a71 ! ,secret>y %all develop
 a sy/em to collect data on ,t\rette    
syndrome1 includ+ epidemiologic         
in=mation ) respect to ! incid5ce1      
preval5ce1 & impact ( ,t\rette syndrome 
9 ! ,unit$ ,/ates4  7#b7 ,broad & n>r[  
def9itions ,! data collection sy/em "u  
p>agraph 7#a7 %all provide = !          
collection ( prim>y data on ,t\rette    
syndrome1 includ+ relat$ data on ! v>i\s
 conditions kn[n to be comorbid )       
,t\rette syndrome4  7#c7 ,collection by 
population & geographical region ,! data
 collection sy/em "u p>agraph 7#a7 %all 
provide = ! collection ( data on !      
availability ( m$ical & social s]vices =
 individuals ) ,t\rette syndrome & _!   

families & ! disaggregation ( su* data  
by population & geographical region4    
7c7 ,collaborative ,rese>* ,c5t]s =     
,t\rette ,syndrome  7#a7 ,9 g5]al ,9    
c>ry+ out subsection 7a71 ! ,secret>y   
%all aw>d grants & contracts to public  
or nonpr(it private entities to pay all 
or "p ( ! co/ ( plann+1 e/abli%+1       
improv+1 & provid+ basic op]at+ support 
= ,collaborative ,rese>* ,c5t]s =       
,t\rette ,syndrome4  7#b7 ,rese>* ,ea*  
c5t] "u p>agraph 7#a7 %all conduct basic
 & cl9ical rese>* into ,t\rette         
syndrome4 ,su* rese>* %\ld include      
inve/igations into ! cause1 diagnosis1  
e>ly detection1 prev5tion1 control1 &   
treatm5t ( ,t\rette syndrome4 ,! rese>* 
conduct$ by su* c5t]s1 z a gr\p1 %all   
include rese>* 9 ! fields ( developm5tal
 neurobiology1 neurosci5ce1 g5etics1    
psy*ology1 & ph>macology4  7#c7 ,s]vices
 = pati5ts  7,a7 ,9 g5]al ,a c5t] "u    
p>agraph 7#a7 may exp5d am\nts provid$  
"u su* p>agraph to c>ry out a program to
 make individuals aw>e ( opportunities  

to p>ticipate z subjects 9 rese>*       
conduct$ by ! c5t]s4  7,b7 ,ref]ral &   
co/s ,a program "u subp>agraph 7,a7 may1
 9 accordance ) su* crit]ia z !         
,secret>y may e/abli%1 provide to !     
subjects describ$ 9 su* subp>agraph1    
ref]rals = heal? & o!r s]vices1 & su*   
pati5t c>e co/s z are requir$ = rese>*4 
7,c7 ,availability & access ,! ext5t to 
:i* a c5t] c demon/rate availability &  
access to cl9ical s]vices %all be       
consid]$ by ! ,secret>y 9 decisions ab\t
 aw>d+ grants & contracts to applicants 
:i* meet ! sci5tific crit]ia = fund+ "u 
?is subsection4  7#d7 ,organization (   
,collaborative ,rese>* ,c5t]s = ,t\rette
 ,syndrome  7,a7 ,9 g5]al ,a c5t] "u    
p>agraph 7#a7 may-- 7i7 use ! facilities
 ( a s+le in/itution2 or  7ii7 be =m$ f 
a consortium ( coop]at+ in/itutions &   
pati5t advocacy gr\ps 9 ord] to maximize
 ! scope ( ! c5t]'s s]vices & geographic
 cov]age4  7,b7 ,eligibility requirem5ts
 ,to be eligible to make facilities s   
available 7z describ$ 9 subp>agraph     

7,a77i77 or p>ticipate 9 su* a          
consortium 7z describ$ 9 subp>agraph    
7,a77ii771 an in/itution or gr\p %all   
meet su* requirem5ts z ! ,secret>y may  
prescribe4  7#e7 ,numb] ( c5t]s2        
duration ( support  7,a7 ,9 g5]al       
,subject to ! availability (            
appropriations1 ! ,secret>y %all provide
 = ! e/abli%m5t ( n few] ?an #d & n m   
?an #f c5t]s "u p>agraph 7#a74  7,b7    
,geographical di/ribution ,! ,secret>y  
%all-- 7i7 ensure t ea* ( ! c5t]s       
e/abli%$ "u p>agraph 7#a7 is locat$ 9 a 
diff]5t region ( ! ,unit$ ,/ates ?an !  
o!r su* c5t]s2 &  7ii7 enc\rage !       
=mation ( su* c5t]s f a consortium (    
entities 7z describ$ 9 p>agraph         
7#d77;,a77ii77 cov]+ multiple regions or
 ,/ates4  7,c7 ,duration ,support = a   
c5t] e/abli%$ "u p>agraph 7#a7 may be   
provid$ "u ?is section = a p]iod ( n to 
exce$ #e ye>s4 ,su* p]iod may be ext5d$ 
= "o or m additional p]iods n exce$+ #e 
ye>s if ! op]ations ( su* c5t] h be5    
review$ & approv$ by an appropriate     

te*nical & sci5tific pe] review gr\p    
e/abli%$ by ! ,secret>y & if su* gr\p   
has recomm5d$ to ! ,secret>y t su* p]iod
 %\ld be ext5d$4  7d7 ,rese>* on        
symptomology & treatm5t ,9 c>ry+ out    
subsection 7a71 ! ,secret>y %all aw>d   
grants on a competitive1 pe]-review$    
basis = rese>* on-- 7#a7 ! full range ( 
symptomology )9 ! ,t\rette syndrome     
cl9ical spectrum2 &  7#b7 ! efficacy (  
treatm5t options = p>ticul> pati5t      
subpopulations4  7e7 ,fund+ ,( ! am\nts 
made available to c>ry out ! programs & 
activities ( ! ,national ,in/itutes (   
,heal? = a fiscal ye>1 ! ,secret>y %all 
designate a portion ( su* am\nts = c>ry+
 out ! programs & activities ( !        
,national ,in/itutes ( ,heal? ) respect 
to ,t\rette syndrome4  4