,i  #aaf? ,,congress  #a/ ,session  ,h4 
,r4 #ahbd  ,,9 ,,! ,,h\se ,,(           
,,repres5tatives  ,m>* #ah1 #bjai,mr4   
,katko 7= himself & ,mr4 ,k5n$y7        
introduc$ ! foll[+ bill2 :i* 0 ref]r$ to
 ! ,committee on ,en]gy & ,comm]ce  ,a  
,,bill  ,to am5d ! ,public ,heal?       
,s]vice ,act to provide = ! e/abli%m5t (
 a meso!lioma pati5t regi/ry1 & = o!r   
purposes4  #a4 ,%ort title ,?is ,act may
 be cit$ z ! ,m>y ,jo ,lawy] ,spano     
,meso!lioma ,pati5t ,regi/ry ,act (     
#bjai4  #b4 ,pati5t regi/ry = meso!lioma
 data collection & rese>* ,title ,,iii (
 ! ,public ,heal? ,s]vice ,act is am5d$ 
by ins]t+ aft] section #cii,v-#f ( su*  
,act 7#db ,u4,s4,c4 #bhj;g-#ag7 !       
foll[+3  #cii,v-#g4 ,pati5t regi/ry =   
meso!lioma data collection & rese>*  7a7
 ,9 g5]al ,! ,secret>y1 act+ ?r\gh !    
,adm9i/rator ( ! ,ag5cy = ,toxic        
,sub/ances & ,disease ,regi/ry1 %all    
develop a pati5t regi/ry to collect data
 on meso!lioma1 includ+ in=mation )     
respect to ! incid5ce & preval5ce ( !   

disease 9 ! ,unit$ ,/ates4  7b7 ,uses ,!
 ,secret>y %all use ! regi/ry "u        
subsection 7a7-- 7#a7 to enhance & exp& 
infra/ructure & activities = track+ !   
epidemiology ( meso!lioma pati5ts2  7#b7
 to collect1 consolidate1 & report on   
heal? in=mation on pati5ts :o h be5     
diagnos$ ) meso!lioma1 includ+ ) respect
 to--  7,a7 treatm5t outcomes1 includ+  
pati5t longevity2 &  7,b7 ! numb] (     
pati5ts receiv+ treatm5t = meso!lioma   
disaggregat$ by hospital2  7#c7 to bett]
 describe ! incid5ce & preval5ce (      
meso!lioma 9 ! ,unit$ ,/ates2  7#d7 to  
facilitate fur!r rese>* on meso!lioma2  
7#e7 to exam9e factors1 su* z           
environm5tal & occupational factors1 t  
may be associat$ ) meso!lioma2  7#f7 to 
bett] outl9e key demographic factors    
7su* z age1 race or e?nicity1 g5d]1 &   
family hi/ory7 associat$ ) meso!lioma2 &
  7#g7 to make ! in=mation 9 su*        
regi/ry1 o!r ?an individually           
id5tifiable in=mation1 available to !   
public to facilitate & enhance rese>*   

on1 & prev5tion & treatm5t (1           
meso!lioma4  7c7 ,cont5t ,9 c>ry+ out   
?is section1 ! ,secret>y-- 7#a7 %all    
provide = ! collection & /orage (       
in=mation on ! incid5ce & preval5ce (   
meso!lioma 9 ! ,unit$ ,/ates2  7#b7 :5  
sci5tifically possible1 %all provide = !
 collection & /orage ( o!r available    
in=mation on meso!lioma1 su* z in=mation
 conc]n+--  7,a7 demographics & o!r     
in=mation associat$ or possibly         
associat$ ) meso!lioma1 su* z age1 race1
 e?nicity1 sex1 geographic location1 &  
family hi/ory2  7,b7 risk factors       
associat$ or possibly associat$ )       
meso!lioma1 includ+ g5etic &            
environm5tal risk factors2 &  7,c7      
diagnosis & progression m>k]s2 &  7#c7  
may provide = ! collection & /orage (   
in=mation relevant to analysis on       
meso!lioma1 su* z in=mation conc]n+--   
7,a7 ! epidemiology ( ! disease2  7,b7 !
 natural hi/ory ( ! disease2  7,c7 !    
prev5tion ( ! disease2  7,d7 !          
detection1 managem5t1 & treatm5t        

approa*es = ! disease2 &  7,e7 !        
developm5t ( outcomes measures4  7d7    
,consultation ,9 c>ry+ out ?is section1 
! ,secret>y %all consult ) individuals )
 appropriate exp]tise1 includ+          
non-,f$]al meso!lioma exp]ts includ+--  
7#a7 epidemiologi/s ) exp]i5ce 9 disease
 surveillance or regi/ries2  7#b7       
repres5tatives ( national volunt>y      
associations t focus on meso!lioma or h 
demon/rat$ exp]i5ce 9 rese>*1 c>e1 or   
pati5t s]vice = meso!lioma2  7#c7 heal? 
in=mation te*nology exp]ts or o!r       
in=mation managem5t speciali/s2  7#d7   
cl9icians ) exp]tise 9 meso!lioma2 &    
7#e7 rese>* sci5ti/s ) exp]i5ce conduct+
 translational rese>* or utiliz+        
surveillance sy/ems = sci5tific rese>*  
purposes4  7e7 ,coord9ation ) o!r ,f$]al
 ag5cies ,! ,secret>y %all make         
in=mation 9 & analysis d]iv$ f ! regi/ry
 "u ?is section available1 z            
appropriate1 to ,f$]al dep>tm5ts &      
ag5cies1 su* z ! ,national ,in/itutes ( 
,heal?1 ! ,food & ,drug ,adm9i/ration1 !

 ,c5t]s = ,m$ic>e  ,m$icaid ,s]vices1 ! 
,ag5cy = ,heal?c>e ,rese>* & ,quality1 !
 ,dep>tm5t ( ,vet]ans ,affairs1 & !     
,dep>tm5t ( ,def5se4  7f7 ,public       
,access ,subject to subsection 7g71 !   
,secret>y %all make in=mation 91 &      
analysis d]iv$ f1 ! regi/ry "u ?is      
section available1 z appropriate1 to !  
public1 includ+ rese>*]s4  7g7 ,privacy 
,! ,secret>y %all ensure t privacy &    
security protections applicable to !    
regi/ry "u ?is section are at lea/ z    
/r+5t z ! privacy & security protections
 "u ,,hipaa privacy & security law 7z   
def9$ 9 section #cjji74  7h7 ,reports to
 ,congress  7#a7 ,initial report ,n lat]
 ?an #ah mon?s aft] ! date ( enactm5t ( 
! ,m>y ,jo ,lawy] ,spano ,meso!lioma    
,pati5t ,regi/ry ,act ( #bjai1 !        
,secret>y %all submit to ! ,congress a  
report t-- 7,a7 %all outl9e--  7i7 !    
f9d+s 9 ! meso!lioma pati5t regi/ry "u  
subsection 7a72  7ii7 future plans =    
expansion or revision ( su* regi/ry2 &  
7iii7 ! scope ( su* regi/ry2 &  7,b7 may

 include a description ( ! activities   
und]tak5 by ! ,secret>y to e/abli%      
p>tn]%ips ) rese>* & pati5t advocacy    
communities to exp& su* regi/ry4  7#b7  
,subsequ5t report ,n lat] ?an #d ye>s   
aft] ! date ( enactm5t ( ! ,m>y ,jo     
,lawy] ,spano ,meso!lioma ,pati5t       
,regi/ry ,act ( #bjai1 ! ,secret>y %all 
submit a report to ! ,congress conc]n+ !
 implem5tation ( ?is section4 ,su*      
report %\ld include in=mation on--  7,a7
 ! developm5t & ma9t5ance ( ! meso!lioma
 pati5t regi/ry "u subsection 7a72  7,b7
 ! type ( in=mation collect$ & /or$ 9 ! 
regi/ry2  7,c7 ! use & availability (   
su* in=mation1 includ+ guidel9es = su*  
use2 &  7,d7 ! use & coord9ation (      
databases t collect or ma9ta9 in=mation 
on meso!lioma4  4