,,ii  #aad? ,,congress  #b;d ,session   
,s4 #bgii  ,,9 ,,! ,,s5ate ,,( ,,!      
,,unit$ ,,/ates  ,april #ad1 #bjaf,mr4  
,m55dez 7= himself1 ,ms4 ,murk[ski1 ,ms4
 ,klobu*>1 ,mr4 ,rubio1 ,mr4 ,reid1     
,mrs4 ,gillibr&1 ,mr4 ,blum5?al1 ,mrs4  
,box]1 ,mr4 ,frank51 ,mr4 ,mc,cain1 ,mr4
 ,s*um]1 ,mr4 ,te/]1 ,mr4 ,m>key1 & ,mr4
 ,durb97 introduc$ ! foll[+ bill2 :i* 0 
read twice & ref]r$ to ! ,committee on  
,heal?1 ,education1 ,labor1 & ,p5sions  
,a ,,bill  ,to require ! ,secret>y (    
,heal? & ,human ,s]vices to develop a   
volunt>y pati5t regi/ry to collect data 
on canc] incid5ce among firefight]s4    
#a4 ,%ort title ,?is ,act may be cit$ z 
! ,firefight] ,canc] ,regi/ry ,act4  #b4
 ,f9d+s ,congress f9ds ! foll[+3  7#a7  
,/udies conduct$ s9ce ! #aiijs h        
indicat$ a /rong l9k betwe5 firefight+ &
 an increas$ risk = sev]al major canc]s4
  7#b7 ,! canc]s id5tifi$ z mo/ common  
among firefight]s accord+ to ^! /udies  
include te/icul> canc]1 :i* male        
firefight]s are #ajb p]c5t m likely to  

be diagnos$ )1 /oma* canc]1 multiple    
myeloma1 & bra9 canc]1 among sev]al     
o!rs4  7#c7 ,! height5$ incid5ce ( canc]
 among firefight]s has be5 attribut$ to 
_! frequ5t exposure to a range ( h>mful 
sub/ances1 includ+ resultant pyrolysis  
products1 toxic p>ticulates1 gases &    
fumes1 metals su* z cadmium & lead1     
*emical sub/ances su* z b5z5e & v9yl    
*loride1 & m9]als su* z asbe/os &       
silicates4  7#d7 ,an ext5sive #bjad /udy
 conduct$ by ! ,national ,in/itute (    
,occupational ,safety & ,heal?1 ov] !   
c\rse ( sev]al ye>s & includ+ almo/     
#cj1jjj firefight]s1 f\nd t firefight]s 
7 at an increas$ risk ( be+ diagnos$ )  
malignant meso!lioma & f\nd pot5tial    
l9ks betwe5 exposure to fire incid5ts & 
height5$ risks = lung canc] & leukemia1 
among sev]al o!rs4  7#e7 ,pa/ /udies    
exam9+ canc] incid5ce among firefight]s 
h be5 limit$ by ! availability &        
/&>dization ( important epidemiological 
data1 relatively small sample sizes1    
inconsi/5cies 9 ! op]ationalization (   

key t]ms & metrics1 incomplete employm5t
 hi/ories1 & an und]repres5tation (     
m9ority1 female1 & volunte] firefight]s4
  7#f7 ,today1 _m ,/ates across ! c\ntry
 ma9ta9 canc] regi/ries t collect &     
collate in=mation reg>d+ canc]          
diagnoses1 demographic in=mation1 &     
treatm5t plans4 ,/ate canc] regi/ries h 
greatly contribut$ to ov]com+ ^!        
ob/acles by (f]+ c5traliz$ repositories 
( in=mation1 :i* rese>*]s 9 ! public &  
private sectors c access :5 conduct+    
rese>* on canc] risks4  7#g7 ,:ile ^!   
,/ate-bas$ canc] regi/ries und\bt$ly    
contribute to fur!r+ rese>* relat$ to   
assess+ canc] incid5ce among            
firefight]s1 a special purpose national 
canc] regi/ry w\ld provide rese>*]s &   
public heal? ag5cies ) m direct &       
compreh5sive access to ! specific set ( 
in=mation !y ne$ to conduct m robu/1    
focus$1 & epidemiologically rigor\s     
rese>* on canc] incid5ce among          
firefight]s4  7#h7 ,ef=ts to und]/&     
canc] incid5ce among firefight]s ?r\gh a

 specializ$ national canc] regi/ry w    
bett] in=m ! k9ds ( precautions         
firefight]s %\ld take 9 ! future1       
improve our und]/&+ ( key               
epidemiological tr5ds1 & pot5tially lead
 to ! developm5t ( m sophi/icat$ safety 
protocols to l[] canc] risks4  #c4      
,pati5t regi/ry = firefight] canc]      
incid5ce  7a7 ,9 g5]al ,! ,secret>y (   
,heal? & ,human ,s]vices 7ref]r$ to 9   
?is section z ! ,secret>y71 act+ ?r\gh !
 ,director ( ! ,c5t]s = ,disease        
,control & ,prev5tion1 %all develop &   
ma9ta9 a volunt>y pati5t regi/ry to     
collect data on canc] incid5ce among    
firefight]s4  7b7 ,use ( regi/ry ,!     
pati5t regi/ry %all be us$ = ! foll[+   
purposes3 7#a7 ,to e/abli% & improve    
collection infra/ructure & activities   
relat$ to ! nationwide monitor+ ( !     
incid5ce ( canc] among firefight]s4     
7#b7 ,to collect1 consolidate1 /ore1 &  
make publicly available epidemiological 
in=mation relat$ to canc] incid5ce &    
tr5ds among firefight]s4  7c7 ,relevant 

data ,9 c>ry+ out ! volunt>y data       
collection = purposes ( inclusion "u !  
pati5t regi/ry "u subsection 7a71 !     
,secret>y %\ld seek to include ! foll[+ 
de-id5tifi$ in=mation3  7#a7 ,) respect 
to canc] diagnoses & treatm5t (         
firefight]s1 de-id5tifi$ in=mation on-- 
7,a7 full detail+ ( physical exam9ations
 & m$ical hi/ory2  7,b7 complete detail+
 ( all relevant diagno/ic te/s & lab    
proc$ures2  7,c7 complete detail+ ( all 
pa?ology & op]ative reports2 &  7,d7    
complete detail+ ( treatm5ts und]gone or
 plann$4  7#b7 ,) respect to individual 
pati5t hi/ory relat+ to ! incid5ce (    
canc] among firefight]s1 de-id5tifi$    
in=mation on--  7,a7 basic demographic  
in=mation1 includ+ ! age ( ! firefight] 
involv$ & age ( onset ( canc]2  7,b7 a  
li/+ ( /atus ( ! firefight] z ei!r      
volunte]1 paid-on-call1 or c>e]         
firefight]2  7,c7 ! numb] ( ye>s on !   
job & details reg>d+ additional         
employm5t exp]i5ce t 0 p]=m$ concurr5tly
 ) firefight+ s]vice or anytime !reaft]2

  7,d7 7i7 a measure ( ! numb] ( fire   
incid5ts att5d$ & ! types ( fire        
incid5ts 7su* z resid5tial h\se fire or 
comm]cial fire72 or  7ii7 9 ! case ( a  
firefight] :o is unable to provide      
in=mation on su* numb] & types1 an      
e/imate ( su* numb] & types bas$ on !   
me?od develop$ "u subsection 7d77#c72 & 
7,e7 a li/ ( additional risk factors1   
includ+ smok+ or drug use1 z ! ,secret>y
 det]m9es relevant4  7#c7 ,any          
additional in=mation1 z ! ,secret>y     
det]m9es necess>y4  7d7 ,me?ods  7#a7 ,9
 g5]al ,= ! purposes describ$ 9         
subsection 7b71 ! ,secret>y is au?oriz$ 
to incorporate que/ions into public     
heal? surveys1 que/ionnaires1 & o!r     
databases 9 exi/5ce z ( ! date (        
enactm5t ( ?is ,act4  7#b7 ,ensur+      
repres5tation ( und]repres5t$ gr\ps 9   
regi/ry ,9 c>ry+ out ?is section1 !     
,secret>y %all take su* measures z !    
,secret>y det]m9es appropriate to       
enc\rage ! inclusion ( data on m9ority1 
female1 & volunte] firefight]s 9 !      

regi/ry e/abli%$ "u ?is section4  7#c7  
,me?od to e/imate numb] & type ( fire   
incid5ts ,= purposes ( subsection       
7c77#b77;,d71 ! ,secret>y1 9            
consultation ) ! exp]ts describ$ 9      
subsection 7e71 %all develop a reliable 
& /&>diz$ me?od = e/imat+ ! numb] ( fire
 incid5ts att5d$ by a firefight] & !    
types ( fire incid5ts s att5d$ 9 ! case 
su* firefight] is unable to provide su* 
in=mation4  7e7 ,consultation ,!        
,secret>y %all1 on a regul> basis1 seek 
fe$back reg>d+ ! utility ( ! regi/ry    
e/abli%$ "u ?is section & ways ! regi/ry
 c be improv$ f non-,f$]al exp]ts 9 !   
foll[+ areas3  7#a7 ,public heal? exp]ts
 ) exp]i5ce 9 develop+ & ma9ta9+ canc]  
regi/ries4  7#b7 ,epidemiologi/s )      
exp]i5ce 9 /udy+ canc] incid5ce4  7#c7  
,cl9icians ) exp]i5ce 9 diagnos+ &      
treat+ canc] incid5ce4  7#d7 ,active &  
retir$ volunte]1 paid-on-call1 & c>e]   
firefight]s & relevant national fire &  
em]g5cy response organizations4  7f7    
,rese>* availability ,! ,secret>y %all  

develop & make public an approval       
process = mak+ de-id5tifi$ canc] regi/ry
 data submitt$ = inclusion 9 ! pati5t   
regi/ry develop$ "u subsection 7a7      
available )\t a fee = public rese>*     
purposes4 ,su* process %all provide t   
su* data %all be made available = su*   
rese>* purposes only if !re is an       
agreem5t to make f9d+s1 j\rnal articles1
 or o!r pr9t or web-bas$ publications   
d]iv$ f su* rese>* public or available  
to ! relevant /akehold]s describ$ 9     
subsection 7e77#d74  7g7 ,privacy ,9    
c>ry+ out ?is ,act1 ! ,secret>y %all    
apply to ! regi/ry develop$ "u          
subsection 7a7 data security provisions 
& privacy /&>ds t comply ) ! be/        
practices ( ! ,c5t]s = ,disease ,control
 & ,prev5tion1 z def9$ by ! ,national   
,in/itute ( ,/&>ds & ,te*nology 9       
,special ,publication #hjj-cg revision  
#a1 & ! ,,hipaa privacy regulation1 z   
def9$ 9 section #aahj7;b77#c7 ( !       
,social ,security ,act 7#db ,u4,s4,c4   
#acbj;d-#i7;b77#c774  7h7 ,au?orization 

( funds ,to c>ry out ?is section1 !re   
are au?oriz$ to be appropriat$          
#b1ejj1jjj = ea* ( ! fiscal ye>s #bjag  
?r\gh #bjba4