,i  #aaf? ,,congress  #a/ ,session  ,h4 
,r4 #cegc  ,,9 ,,! ,,h\se ,,(           
,,repres5tatives  ,june #bg1 #bjai,mr4  
,lujn 7= himself1 ,ms4 ,haal&1 & ,ms4   
,torres ,small ( ,new ,mexico7 introduc$
 ! foll[+ bill2 :i* 0 ref]r$ to !       
,committee on ,en]gy & ,comm]ce  ,a     
,,bill  ,to increase rese>*1 education1 
& treatm5t = c]ebral cav]n\s            
mal=mations4  #a4 ,%ort title ,?is ,act 
may be cit$ z ! ,c]ebral ,cav]n\s       
,mal=mations ,cl9ical ,aw>5ess1 ,rese>*1
 & ,education ,act ( #bjai or !         
,,ccm-,,c>e ,act4  #b4 ,f9d+s ,congress 
f9ds z foll[s3  7#a7 ,c]ebral cav]n\s   
mal=mations 7ref]r$ to 9 ?is section z  
,,ccm71 also kn[n z cav]n\s angioma1 or 
cav]noma1 is a deva/at+ blood vessel    
disease *>act]iz$ by vascul> lesions t  
develop & gr[ )9 ! bra9 & sp9al cord4   
7#b7 ,detection ( ,,ccm lesions is      
a*iev$ ?r\gh co/ly & specializ$ m$ical  
imag+ te*niques1 (t5 n accessible or    
conv5i5t to pati5ts :o ne$ !m4  7#c7    
,:ile ,,ccm is a common type ( vascul>  

anomaly1 _m individuals are n aw>e !y h 
! disease until ! onset ( s]i\s cl9ical 
symptoms4 ,,ccm is (t5 inh]it$ unkn[+ly4
  7#d7 ,,ccm affects an e/imat$ #fjj1jjj
 p 9 ! ,unit$ ,/ates4  7#e7 ,individuals
 diagnos$ ) ,,ccm may exp]i5ce          
neurological deficits1 seizure1 /roke1  
or sudd5 dea?4  7#f7 ,due to limit$     
rese>*1 !re is curr5tly no treatm5t =   
,,ccm o!r ?an bra9 & sp9al surg]y1 &    
only = c]ta9 pati5ts4  7#g7 ,!re is also
 a %ortage ( tra9$ physicians to provide
 skill$ & timely diagnosis & appropriate
 treatm5t = ,,ccm4  7#h7 ,:ile ! h]$it>y
 =m ( ,,ccm may occur among any         
e?nicity1 ! pres5ce ( a mutation call$ !
 common ,hispanic mutation1 has pass$   
?r\gh #ad or m g5]ations ( ,am]ican     
desc5dants f ! orig9al ,spani% settl]s (
 ! ,s\?we/ 9 ! #aeijs4 ,new ,mexico has 
! highe/ population d5sity ( ,,ccm 9 !  
_w2 ,texas1 ,arizona1 & ,colorado also h
 high rates ( ,,ccm due to ! common     
,hispanic mutation4  7#i7 ,a second     
mutation 7,,ccm#b ,common ,deletion7    

orig9at+ 9 ! ,s\!a/]n ,unit$ ,/ates be=e
 #ahjj has increas$ rates ( ! illness 9 
,s\? ,c>ol9a1 ,georgia1 ,florida1       
,alabama1 ,mississippi1 ,l\isiana1      
,texas1 ,oklahoma1 ,k5tucky1 ,kansas1 & 
nor!rn ,cali=nia4  #c4 ,expansion &     
coord9ation ( activities ( national     
in/itutes ( heal? ) respect to c]ebral  
cav]n\s mal=mations rese>* ,"p ,b (     
title ,,iv ( ! ,public ,heal? ,s]vice   
,act 7#db ,u4,s4,c4 #bhd et seq47 is    
am5d$ by add+ at ! end ! foll[+3        
#dji,k4 ,c]ebral cav]n\s mal=mations    
rese>* activities  7a7 ,expansion &     
coord9ation ( activities ,! ,director ( 
,,nih1 9 coord9ation ) ! directors ( !  
,national ,in/itute ( ,neurological     
,disord]s & ,/roke1 ! ,national ,c5t] = 
,advanc+ ,translational ,sci5ces1 !     
,national ,he>t1 ,lung1 & ,blood        
,in/itute1 & o!r national rese>*        
in/itutes1 z appropriate1 = ! purpose ( 
conduct+ rese>* & relat$ activities     
conc]n+ c]ebral cav]n\s mal=mations     
7ref]r$ to 9 ?is section z ,,ccm7--     

7#a7 %all /r5g!n & coord9ate ef=ts ( !  
,national ,in/itutes ( ,heal?2 &  7#b7  
may aw>d grants & coop]ative agreem5ts  
to public or nonpr(it private entities  
7includ+ ,/ate heal? dep>tm5ts1         
political subdivisions ( ,/ates1        
univ]sities1 & o!r m$ical or educational
 entities74  7b7 ,activities ,! rese>* &
 relat$ activities describ$ 9 subsection
 7a7 %all include ! foll[+3 7#a7        
,cl9ical1 translational1 & basic rese>* 
,! ,director ( ,,nih %all conduct or    
support1 ?r\gh fund+ opportunity        
ann\ncem5ts1 grants1 or coop]ative      
agreem5ts1 basic1 cl9ical1 &            
translational rese>* on ,,ccm1 includ+  
rese>* on--  7,a7 ! id5tification &     
developm5t ( biom>k]s t fulfill !       
requirem5t ( ! ,food & ,drug            
,adm9i/ration = biom>k] qualification z 
prop] measures ( ,,ccm pa?og5ic biology 
or response to cl9ical int]v5tion2  7,b7
 safety or efficacy = new or repurpos$  
curr5tly approv$ drugs = ,,ccm treatm5t2
  7,c7 rese>* relat$ to improv+ &       

measur+ ! quality ( life = individuals )
 ,,ccm & _! families2  7,d7             
contributions ( g5etic v>iation to      
cl9ical pres5tation z t>gets = !rapy2   
7,e7 e>ly detection1 diagnosis1 &       
treatm5t ( ,,ccm2  7,f7 cl9ical tra9+   
programs aim$ at increas+ ! numb] (     
sci5ti/s & cl9icians :o are tra9$ to    
treat pati5ts & c>ry out ! rese>*       
describ$ 9 ?is p>agraph2  7,g7 cont9u$  
developm5t & expansion ( novel animal   
models = precl9ical rese>* relat+ to    
,,ccm2  7,h7 pre-cl9ical & cl9ical      
rese>* relat$ to repurpos+ curr5tly     
approv$ drugs = ,,ccm treatm5t2  7,i7   
proteomic1 ph>macological1 & cell       
biological analysis ( ,,ccm molecules2  
7,j7 biological me*anisms = lesion      
g5esis1 developm5t1 & maturation2  7,k7 
biological me*anisms = lesion ble$+ &   
symptomology2  7,l7 novel biom$ical &   
ph>macological int]v5tions design$ to   
inhibit new lesion developm5t1 lesion   
gr[?1 & lesion ble$+2  7,m7 novel       
biom$ical & ph>macological int]v5tions  

design$ to t>get exi/+ lesions to r$uce 
_! size & cl9ical activity2  7,n7       
cont9u$ rese>* relat$ to und]/&+ bett] !
 natural hi/ory & cl9ical v>iation      
associat$ ) ,,ccm1 p>ticul>ly z x       
relates to ! developm5t ( drug          
developm5t tools & cl9ical outcome      
assessm5ts2  7,o7 ! gut-bra9 axis & !   
effects ( microbiome composition on     
cl9ical symptomology2 &  7,p7 !         
microbiome z a !rapeutic t>get = ,,ccm  
treatm5t4  7#b7 ,facilitation ( rese>*  
res\rces2 cl9ical trial prep>$ness  7,a7
 ,9 g5]al ,! ,director ( ,,nih %all aw>d
 grants & contracts to public or        
nonpr(it private entities to fund all or
 "p ( ! co/ ( plann+1 e/abli%+1 &       
provid+ basic op]at+ support = a network
 ( ,,ccm ,cl9ical ,rese>* ,c5t]s1       
includ+ ,coord9at+ & ,p>ticipat+ c5t]s  
reg>d+ rese>* on v>i\s =ms ( ,,ccm4     
7,b7 ,cl9ical & rese>* coord9ation c5t]s
  7i7 ,9 g5]al ,! ,director ( ,,nih %all
 build ^u ! network creat$ by ! ,u#ja   
,cl9ical ,trial ,read9ess ,rese>*       

,project to id5tify & support !         
developm5t ( #b geographically di/ribut$
 national cl9ical & rese>* coord9at+    
c5t]s ) unique cl9ical exp]tise & !     
pot5tial = coord9at+ multi-site cl9ical 
drug trials ) respect to ,,ccm4  7ii7   
,duties ,! coord9at+ c5t]s id5tifi$ "u  
clause 7i7 %all provide a model = !     
p>ticipation c5t]s describ$ 9 p>agraph  
7#c71 facilitate m$ical rese>* to       
develop a cure = ,,ccm1 & enhance !     
m$ical c>e ( individuals ) ,,ccm        
nationwide1 includ+ by--  7,i7 ma9ta9+  
an in/itutional infra/ructure capable ( 
ho/+ cl9ical trials & facilitat+        
translational rese>* projects &         
collaborations = cl9ical trials2  7,,ii7
 implem5t+ ! programs d$icat$ to pati5t 
education1 pati5t outrea*1 & aw>5ess    
develop$ by ! ,c]ebral ,cav]n\s         
,mal=mations ,consortium "u subsection  
7c77#c77;,b72  7,,iii7 develop+ !       
capacity to e/abli% & ma9ta9            
communication ) o!r major ,,ccm rese>* &
 c>e in/itutions int]nationally =       

in=mation %>+ & coord9ation ( rese>*    
activities2  7,,iv7 demon/rat+ cl9ical  
exp]tise 9 ! managem5t ( ,,ccm & appo9t+
 a director & support /aff1 includ+ a   
tra9ee & pati5t repres5tative1 = ,,ccm  
rese>* programm+2  7,v7 treat+ a        
suffici5t numb] ( eligible pati5ts =    
p>ticipation ) p>ticul> focus on unique 
subpopulations1 su* z pati5ts ) ! common
 ,hispanic mutation1 ,a%k5azi ,jewi%    
mutation1 ,,ccm#b ,common ,deletion1 or 
,,ccm#c g5e mutation c>ri]s2 &  7,,vi7  
ma9ta9+ a teleheal? infra/ructure to    
support & provide cl9ical consultation =
 remote & und]s]v$ communities4  7#c7   
,p>ticipation c5t]s  7,a7 ,9 g5]al ,!   
,director ( ,,nih %all build ^u !       
network creat$ by ! ,u#ja ,cl9ical      
,trial ,read9ess ,rese>* ,project to    
id5tify & support ! developm5t (        
approximately #f to #aj cl9ical & rese>*
 p>ticipation c5t]s to facilitate m$ical
 rese>* to develop a cure = ,,ccm &     
enhance ! m$ical c>e ( individuals )    
,,ccm1 9 p>tn]%ip ) ! coord9at+ c5t]s "u

 p>agraph 7#b7 & o!r national &         
int]national entities1 z appropriate4   
7,b7 ,eligibility ,to qualify =         
selection z a p>ticipation c5t] "u      
subp>agraph 7,a71 an entity %all-- 7i7  
at ! "t ( selection--  7,i7 be affiliat$
 ) an e/abli%$ rese>* network ( !       
,national ,in/itutes ( ,heal?2 &  7,,ii7
 h ! pot5tial to p>ticipate 9 a         
multisite cl9ical drug trial ) respect  
to ,,ccm2  7ii7 demon/rate-- 7,i7 an    
in/itutional infra/ructure capable (    
ho/+ a cl9ical trial site & facilitat+  
translational projects & collaborations 
= cl9ical trials2  7,,ii7 ! capacity to 
ma9ta9 communication ) o!r major ,,ccm  
rese>* & c>e in/itutions int]nationally 
= in=mation %>+ & coord9ation ( rese>*  
activities1 especially ?r\gh heal?      
in=mation te*nology2 &  7,,iii7 cl9ical 
exp]tise 9 ,,ccm managem5t or complete !
 ,,ccm cl9ical tra9+ program "u         
subsection 7c77#d72 &  7iii7 h a        
suffici5t numb] ( eligible pati5ts )    
,,ccm4  7,c7 ,duration ( support ,!     

,director ( ,,nih may provide support = 
p>ticipation c5t]s "u ?is section = a   
p]iod n to exce$ #e ye>s4 ,! ,director (
 ,,nih may ext5d ! p]iod ( support = a  
c5t] = "o or m additional p]iods1 n to  
exce$ an additional #e ye>s1 if !       
op]ations ( su* c5t] h be5 review$ by an
 appropriate te*nical & sci5tific pe]   
review gr\p e/abli%$ by ! ,director (   
,,nih & if su* gr\p has recomm5d$ to !  
,director t su* p]iod %\ld be ext5d$4   
7c7 ,c]ebral cav]n\s mal=mations        
consortium  7#a7 ,9 g5]al ,! ,director (
 ,,nih %all build ^u ! network creat$ by
 ! ,u#ja ,cl9ical ,trial ,read9ess      
,rese>* ,project to conv5e a ,c]ebral   
,cav]n\s ,mal=mations ,rese>*           
,consortium 7ref]r$ to 9 ?is section z !
 consortium74  7#b7 ,memb]%ip ,!        
consortium-- 7,a7 %all include          
repres5tatives (--  7i7 ! coord9at+     
c5t]s select$ "u subsection 7b77#b72 &  
7ii7 at lea/ #a national ,,ccm pati5t   
advocacy organization1 :i* may be an    
entity t receives a grant or contract "u

 subsection 7b77#b77;,a72 &  7,b7 may   
include repres5tatives ( ! ,national    
,in/itutes ( ,heal? or ! ,food & ,drug  
,adm9i/ration1 9 an advisory or ex      
(ficio role4  7#c7 ,responsibilities    
,?r\gh a cons5sus bas$ decisionmak+     
model1 ! consortium %all divide         
assignm5ts & be responsible =--  7,a7   
develop+ & implem5t+ tra9+ programs =   
cl9icians & sci5ti/s 9 accordance )     
p>agraph 7#d72  7,b7 develop+ pati5t    
education1 outrea*1 & aw>5ess programs &
 mat]ials1 :i* may be tailor$ = specific
 regional ne$s at coord9at+ c5t]s1      
includ+--  7i7 a regional multim$ia     
public aw>5ess campaign2  7ii7 pati5t   
education mat]ials = di/ribution by     
regional physician & surgeon (fices2    
7iii7 an education program = elem5t>y & 
second>y s*ool nurses to facilitate e>ly
 detection & diagnosis ( ,,ccm 9 areas 9
 :i* !re is a high d5sity ( cases (     
,,ccm2  7iv7 regul> regional pati5t &   
family ori5t$ educational conf]5ces2 &  
7v7 nationally relevant electronic heal?

 tea*+ & communication tools & a network
 ( pr(essional capacity & pati5t &      
family support2 &  7,c7 prep>+ a        
biannual report to ,congress1 9         
accordance ) p>agraph 7#e74  7#d7 ,tra9+
 program = cl9icians & sci5ti/s  7,a7 ,9
 g5]al ,! consortium1 9 coop]ation ) !  
coord9at+ c5t]s1 %all e/abli% or exp& a 
physician tra9+ program1 includ+        
in=mation & education on advances 9 !   
diagnosis & treatm5t ( ,,ccm1 & tra9+ & 
cont9u+ education ?r\gh programs =      
sci5ti/s1 physicians1 m$ical /ud5ts1 &  
o!r heal? pr(essionals & c>e coord9ators
 :o provide c>e = pati5ts ) ,,ccm1      
teleheal?1 & rese>* relevant to ,,ccm1 =
 ! purpose ( support+ ! developm5t ( new
 p>ticipation c5t]s ?r\gh educational   
programm+ to ga9 ! exp]tise ne$$ to     
become cl9ical & rese>* p>ticipation    
c5t]s ) ! pot5tial to p>ticipate 9      
cl9ical drug trials4  7,b7 ,/ip5ds ,!   
,director ( ,,nih may provide /ip5ds =  
heal? pr(essionals :o are enroll$ 9 !   
tra9+ programs describ$ 9 subp>agraph   

7,a74  7,c7 ,eligibility ,to be eligible
 to p>ticipate 9 ! tra9+ program1 an    
individual %all be affiliat$ ) an entity
 t is 9 an exi/+ cl9ical rese>* network 
( ! ,national ,in/itutes ( ,heal?4  7#e7
 ,report to ,congress ,! consortium %all
 bi5nially submit to ! ,committee on    
,heal?1 ,education1 ,labor1 & ,p5sions (
 ! ,s5ate & ! ,committee on ,en]gy &    
,comm]ce ( ! ,h\se ( ,repres5tatives a  
report t describes ! rese>*1 education1 
& o!r activities on ,,ccm conduct$ or   
support$ ?r\gh ! ,dep>tm5t ( ,heal? &   
,human ,s]vices4 ,ea* su* report %all   
include--  7,a7 a rese>* plan2  7,b7    
provisions specify+ ! am\nts exp5d$ by !
 ,dep>tm5t ( ,heal? & ,human ,s]vices ) 
respect to v>i\s =ms ( ,,ccm1 includ+ ^?
 affect$ by ! common ,hispanic          
,mutation1 ,a%k5azi ,jewi% mutation1    
,,ccm#b ,common ,deletion1 ,,ccm#c g5e  
mutations1 & o!r familial & sporadic =ms
 ( c]ebral cav]n\s mal=mation2 &  7,c7  
recomm5dations = p>ticul> projects or   
types ( projects t ! national rese>*    

in/itutes or o!r entities 9 ! field (   
rese>* %\ld conduct on inh]it$ or       
non-inh]it$ =ms ( ,,ccm4  7d7           
,prioritize ,,ccm fund+ = biote* ,!     
,director ( ,,nih1 9 coord9ation ) !    
directors ( ! ,national ,in/itute (     
,neurological ,disord]s & ,/roke1 !     
,national ,c5t] = ,advanc+              
,translational ,sci5ces1 ! ,national    
,he>t1 ,lung1 & ,blood ,in/itute1 & o!r 
national rese>* in/itutes1 z            
appropriate1 %all prioritize ! provision
 ( grant fund+ = small biote*nology     
entities t are work+ to develop         
treatm5ts = ,,ccm4  4  #d4 ,c5t]s =     
disease control & prev5tion c]ebral     
cav]n\s mal=mations surveillance &      
rese>* programs ,"p ,b ( title ,,iii ( !
 ,public ,heal? ,s]vice ,act 7#db       
,u4,s4,c4 #bdc et seq47 is am5d$ by     
ins]t+ aft] section #cag,t ! foll[+3    
#cag,u4 ,c]ebral cav]n\s mal=mations    
surveillance & rese>* programs  7a7 ,9  
g5]al ,! ,secret>y1 act+ ?r\gh !        
,director ( ! ,c5t]s = ,disease ,control

 & ,prev5tion1 may aw>d grants 9 su*    
sums z may be necess>y & coop]ative     
agreem5ts to public or nonpr(it private 
entities 7includ+ ,/ate heal? dep>tm5ts1
 political subdivisions ( ,/ates1       
univ]sities1 & o!r m$ical or educational
 entities7 = ! collection1 analysis1 &  
report+ ( data on c]ebral cav]n\s       
mal=mations 7ref]r$ to 9 ?is section z  
,,ccm74  7b7 ,national c]ebral cav]n\s  
mal=mations epidemiology program ,!     
,secret>y %all aw>d grants & coop]ative 
agreem5ts1 includ+ te*nical assi/ance1  
to public or nonpr(it private entities  
=--  7#a7 ! collection1 analysis1 &     
report+ ( data on ,,ccm2 &  7#b7        
epidemiological activities1 includ+     
enc\rag+ consi/5cy 9 ,,icd-#aj cod+1    
collect+ & analyz+ in=mation on ! numb]1
 incid5ce1 correlates1 & symptoms (     
cases & ! cl9ical utility ( specific    
practice patt]ns4  7c7 ,national        
surveillance program ,! ,secret>y %all--
 7#a7 provide = a national surveillance 
program = ! purpose ( c>ry+ out         

epidemiological activities reg>d+ ,,ccm1
 includ+ collect+ & analyz+ in=mation on
 ! numb]1 incid5ce1 correlates1 &       
symptoms ( cases ( ,,ccm & ! cl9ical    
utility 7includ+ co/s & b5efits7 (      
specific practice patt]ns2 &  7#b7 :]ev]
 possible1 ensure t ! surveillance      
program is coord9at$ ) ! data & sample  
collection activities ( ! ,national     
,in/itutes ( ,heal? "u section #dji,k4  
7d7 ,te*nical assi/ance ,9 mak+ aw>ds "u
 ?is section1 ! ,secret>y may provide   
direct te*nical assi/ance1 includ+      
p]sonnel support4  7e7 ,coord9ation )   
cl9ical c5t]s ,! ,secret>y %all ensure t
 epidemiological in=mation is made      
available to cl9ical c5t]s z support$ by
 ! ,director ( ! ,national ,in/itutes ( 
,heal? "u section #dji,k4  7f7          
,au?orization ( appropriations ,!re are 
au?oriz$ to be appropriat$ su* sums z   
may be necess>y to c>ry out ?is section4
  4  #e4 ,food & drug adm9i/ration      
c]ebral cav]n\s mal=mations cl9ical     
trial prep>$ness & support program  7a7 

,biom>k] qualification program ,!       
,secret>y ( ,heal? & ,human ,s]vices1   
act+ ?r\gh ! ,commission] ( ,food &     
,drugs1 %all coord9ate ) cl9ical c5t]s1 
inve/igators1 & advocates to support !  
qualification ( appropriate surrogate   
biom>k]s 9 an ef=t to ha/5 ! pace (     
cl9ical trials = c]ebral cav]n\s        
mal=mation4  7b7 ,cl9ical outcome       
assessm5t qualification ,! ,secret>y (  
,heal? & ,human ,s]vices1 act+ ?r\gh !  
,commission] ( ,food & ,drugs1 %all     
coord9ate ) cl9ical c5t]s1 inve/igators1
 & advocates to support ! qualification 
( newly develop$ pati5t report$ outcome 
measures = quality ( life z a cl9ical   
outcome 9 an ef=t to ha/5 ! pace (      
cl9ical trials = c]ebral cav]n\s        
mal=mation4  7c7 ,inve/igational new    
drug application ,! ,secret>y ( ,heal? &
 ,human ,s]vices1 act+ ?r\gh !          
,commission] ( ,food & ,drugs1 %all     
coord9ate ) cl9ical c5t]s1 inve/igators1
 & advocates to support appropriate     
inve/igational new drug applications "u 

section #eje7;i7 ( ! ,f$]al ,food1      
,drug1 & ,cosmetic ,act 7#ba ,u4,s4,c4  
#cee7;i77 9 an ef=t to ha/5 ! pace (    
cl9ical trials = c]ebral cav]n\s        
mal=mation4  7d7 ,adaptive trial design 
& exp$it$ review pa?ways ,! ,secret>y ( 
,heal? & ,human ,s]vices1 act+ ?r\gh !  
,commission] ( ,food & ,drugs1 %all     
coord9ate ) cl9ical c5t]s1 inve/igators1
 & advocates to support appropriate     
adaptive trial designs = r>e disease    
rese>* & exp$it$ pe] review me*anisms = 
includ+ ,orphan ,drug ,designation1 ,fa/
 ,track1 ,break?r\gh ,!rapy             
,designation1 ,priority ,review or      
,accel]at$ ,review1 :]e appropriate1 9  
an ef=t to ha/5 ! pace ( cl9ical trials 
= c]ebral cav]n\s mal=mation4