,,ii ,cal5d> ,no4 #djh #aad? ,,congress 
#b;d ,session  ,s4 #hdi  ,,9 ,,! ,,s5ate
 ,,( ,,! ,,unit$ ,,/ates  ,m>* #bd1     
#bjae,mr4 ,isakson 7= himself1 ,mr4     
,murphy1 ,mr4 ,vitt]1 ,mr4 ,casey1 ,mr4 
,wick]1 ,ms4 ,baldw91 ,mr4 ,coons1 ,mrs4
 ,box]1 ,mr4 ,cassidy1 ,ms4 ,/ab5[1     
,mrs4 ,fe9/e91 ,mr4 ,kirk1 ,mr4 ,m55dez1
 ,mr4 ,c>p]1 ,mr4 ,re$1 ,mr4 ,m>key1    
,mr4 ,pet]s1 ,mrs4 ,gillibr&1 ,ms4      
,murk[ski1 ,ms4 ,klobu*>1 ,mr4 ,book]1  
,mr4 ,alex&]1 ,mr4 ,nelson1 & ,mr4      
,boozman7 introduc$ ! foll[+ bill2 :i* 0
 read twice & ref]r$ to ! ,committee on 
,heal?1 ,education1 ,labor1 & ,p5sions  
,april #d1 #bjaf,report$ by ,mr4        
,alex&]1 ) an amendment,strike out all  
aft] ! enact+ clause & ins]t ! "p pr9t$ 
9 italic  ,a ,,bill  ,to am5d ! ,public 
,heal? ,s]vice ,act to provide =        
sy/ematic data collection & analysis &  
epidemiological rese>* reg>d+ ,multiple 
,scl]osis 7,,ms71 ,p>k9son's disease1 & 
o!r neurological diseases4  #a4 ,%ort   
title ,?is ,act may be cit$ z ! ,advanc+

 ,rese>* = ,neurological ,diseases ,act 
( #bjae4  #b4 ,national neurological    
diseases surveillance sy/em ,"p ,p (    
title ,,iii ( ! ,public ,heal? ,s]vice  
,act 7#db ,u4,s4,c4 #bhj;g et seq47 is  
am5d$ by add+ at ! end ! foll[+3        
#cii,v-#f ,surveillance ( neurological  
diseases  7a7 ,9 g5]al ,! ,secret>y1    
act+ ?r\gh ! ,director ( ! ,c5t]s =     
,disease ,control & ,prev5tion1 %all--  
7#a7 enhance & exp& infra/ructure &     
activities to track ! epidemiology (    
neurological diseases1 includ+ multiple 
scl]osis & ,p>k9son's disease2 &  7#b7  
incorporate in=mation obta9$ ?r\gh su*  
activities into a /ati/ically s\nd1     
sci5tifically cr$ible1 integrat$        
surveillance sy/em1 to be kn[n z !      
,national ,neurological ,diseases       
,surveillance ,sy/em4  7b7 ,rese>* ,!   
,secret>y %all ensure t ! ,national     
,neurological ,diseases ,surveillance   
,sy/em is design$ 9 a mann] t           
facilitates fur!r rese>* on neurological
 diseases4  7c7 ,cont5t ,9 c>ry+ out    

subsection 7a71 ! ,secret>y-- 7#a7 %all 
provide = ! collection & /orage (       
in=mation on ! incid5ce & preval5ce (   
neurological diseases 9 ! ,unit$ ,/ates2
  7#b7 to ! ext5t practicable1 %all     
provide = ! collection & /orage ( o!r   
available in=mation on neurological     
diseases1 su* z in=mation conc]n+--     
7,a7 demographics & o!r in=mation       
associat$ or possibly associat$ )       
neurological diseases1 su* z age1 race1 
e?nicity1 sex1 geographic location1 &   
family hi/ory2  7,b7 risk factors       
associat$ or possibly associat$ )       
neurological diseases1 includ+ g5etic & 
environm5tal risk factors2 &  7,c7      
diagnosis & progression m>k]s2  7#c7 may
 provide = ! collection & /orage (      
in=mation relevant to analysis on       
neurological diseases1 su* z in=mation  
conc]n+--  7,a7 ! epidemiology ( !      
diseases2  7,b7 ! natural hi/ory ( !    
diseases2  7,c7 ! prev5tion ( !         
diseases2  7,d7 ! detection1 managem5t1 
& treatm5t approa*es = ! diseases2 &    

7,e7 ! developm5t ( outcomes measures2 &
  7#d7 may address issues id5tifi$ dur+ 
! consultation process "u subsection    
7d74  7d7 ,consultation ,9 c>ry+ out ?is
 section1 ! ,secret>y %all consult )    
individuals ) appropriate exp]tise1     
includ+--  7#a7 epidemiologi/s )        
exp]i5ce 9 disease surveillance or      
regi/ries2  7#b7 repres5tatives (       
national volunt>y heal? associations t--
  7,a7 focus on neurological diseases1  
includ+ multiple scl]osis & ,p>k9son's  
disease2 &  7,b7 h demon/rat$ exp]i5ce 9
 rese>*1 c>e1 or pati5t s]vices2  7#c7  
heal? in=mation te*nology exp]ts or o!r 
in=mation managem5t speciali/s2  7#d7   
cl9icians ) exp]tise 9 neurological     
diseases2 &  7#e7 rese>* sci5ti/s )     
exp]i5ce conduct+ translational rese>*  
or utiliz+ surveillance sy/ems =        
sci5tific rese>* purposes4  7e7 ,grants 
,! ,secret>y may aw>d grants to1 or ent]
 into contracts or coop]ative agreem5ts 
)1 public or private nonpr(it entities  
to c>ry out activities "u ?is section4  

7f7 ,coord9ation ) o!r ,f$]al ag5cies   
,subject to subsection 7h71 ! ,secret>y 
%all make in=mation & analysis 9 !      
,national ,neurological ,diseases       
,surveillance ,sy/em available1 z       
appropriate1 to ,f$]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  7g7 ,public access
 ,subject to subsection 7h71 ! ,secret>y
 %all make in=mation & analysis 9 !     
,national ,neurological ,diseases       
,surveillance ,sy/em available1 z       
appropriate1 to ! public1 includ+       
rese>*]s4  7h7 ,privacy ,! ,secret>y    
%all ensure t privacy & security        
protections applicable to ! ,national   
,neurological ,diseases ,surveillance   
,sy/em are at lea/ z /r+5t z ! privacy &
 security protections "u ,,hipaa privacy
 & security law 7z def9$ 9 section      
#cjji7;a77#b774  7i7 ,report ,n lat] ?an

 #d ye>s aft] ! date ( ! enactm5t ( ?is 
section1 ! ,secret>y %all submit a      
report to ! ,congress conc]n+ !         
implem5tation ( ?is section4 ,su* report
 %all include in=mation on--  7#a7 !    
developm5t & ma9t5ance ( ! ,national    
,neurological ,diseases ,surveillance   
,sy/em2  7#b7 ! type ( in=mation        
collect$ & /or$ 9 ! ,sy/em2  7#c7 ! use 
& availability ( su* in=mation1 includ+ 
guidel9es = su* use2 &  7#d7 ! use &    
coord9ation ( databases t collect or    
ma9ta9 in=mation on neurological        
diseases4  7j7 ,def9ition ,9 ?is        
section1 ! t]m national volunt>y heal?  
association means a national nonpr(it   
organization ) *apt]s1 o!r affiliat$    
organizations1 or networks 9 ,/ates     
?r\gh\t ! ,unit$ ,/ates4  7k7           
,au?orization ( appropriations ,to c>ry 
out ?is section1 !re is au?oriz$ to be  
appropriat$ #e1jjj1jjj = ea* ( fiscal   
ye>s #bjae ?r\gh #bjai4  4  #a4 ,%ort   
title ,?is ,act may be cit$ z ! ,advanc+
 ,rese>* = ,neurological ,diseases ,act 

( #bjaf4  #b4 ,advanc+ rese>* =         
neurological diseases ,"p ,p ( title    
,,iii ( ! ,public ,heal? ,s]vice ,act   
7#db ,u4,s4,c4 #bhj;g et seq47 is am5d$ 
by ins]t+ aft] section #cii,s1 ! foll[+3
  #cii,s-#a4 ,advanc+ rese>* =          
neurological diseases  7a7 ,9 g5]al ,!  
,secret>y may improve ! collection (    
epidemiological & surveillance data on  
neurological diseases 7includ+1 =       
purposes ( ?is section1 bo? neurological
 diseases & neurological conditions71   
:i* may include ! incorporation ( su*   
data into a regi/ry1 to facilitate      
rese>* & improve public heal?1 includ+1 
z appropriate1 by lev]ag+ exi/+         
surveillance activities & regi/ries     
e/abli%$ "u ?is ,act4  7b7 ,cont5t ,9   
c>ry+ out subsection 7a71 ! ,secret>y-- 
7#a7 %all provide = ! collection &      
/orage ( in=mation to bett] describe !  
incid5ce & preval5ce ( neurological     
diseases 9 ! ,unit$ ,/ates id5tifi$ "u  
p>agraph 7#b72  7#b7 %all initially     
id5tify & focus on up to five           

neurological diseases t available data  
indicate are ! mo/ preval5t or pres5t a 
significant public heal? burd52  7#c7   
%all id5tify1 build ^u1 lev]age1 &      
coord9ate among exi/+ data &            
surveillance sy/ems1 surveys1 regi/ries1
 & o!r exi/+ ,f$]al public heal? &      
infra/ructure :]ev] possible2  7#d7 %all
 ensure t any neurological disease      
surveillance activities conduct$        
pursuant to ?is section1 includ+ any su*
 regi/ry1 are design$ 9 a mann] t       
facilitates rese>* on neurological      
diseases2  7#e7 %all1 to ! ext5t        
practicable1 provide = ! collection &   
/orage ( in=mation relevant to !        
id5tifi$ neurological diseases1 su* z-- 
7,a7 demographics1 su* z age1 race1     
e?nicity1 sex1 geographic location1 &   
family hi/ory1 & o!r in=mation1 z       
appropriate2  7,b7 risk factors t may be
 associat$ ) c]ta9 neurological         
diseases2 &  7,c7 diagnosis &           
progression m>k]s2  7#f7 may provide = !
 collection & /orage ( additional       

in=mation relevant to analysis on       
neurological diseases1 su* z in=mation  
reg>d+--  7,a7 ! natural hi/ory ( !     
diseases2  7,b7 ! prev5tion1 detection1 
managem5t1 & treatm5ts or treatm5t      
approa*es = ! diseases2 &  7,c7 !       
developm5t ( outcomes measures2 &  7#g7 
may address issues id5tifi$ dur+ !      
consultation process describ$ 9         
subsection 7c74  7c7 ,consultation ,9   
c>ry+ out ?is section1 ! ,secret>y %all 
consult ) exp]ts1 :o may include-- 7#a7 
epidemiologi/s ) exp]i5ce 9 disease     
surveillance or regi/ries2  7#b7        
repres5tatives ( national & volunt>y    
heal? associations t focus on           
neurological diseases & h demon/rat$    
exp]i5ce 9 rese>*1 c>e1 or pati5t       
s]vices2  7#c7 heal? in=mation te*nology
 exp]ts or o!r in=mation managem5t      
speciali/s2  7#d7 cl9icians ) exp]tise 9
 neurological diseases2 &  7#e7 rese>*  
sci5ti/s ) exp]i5ce conduct+            
translational rese>* or utiliz+         
surveillance sy/ems or regi/ries =      

sci5tific rese>* purposes4  7d7 ,grants 
,! ,secret>y may aw>d grants to1 or ent]
 into contracts or coop]ative agreem5ts 
)1 public or private nonpr(it entities  
to c>ry out activities "u ?is section4  
7e7 ,coord9ation ) o!r f$]al ag5cies    
,consi/5t ) applicable privacy laws1 !  
,secret>y %all make in=mation & analysis
 p]ta9+ to in=mation collect$ "u ?is    
section available1 z appropriate1 to    
relevant ,f$]al dep>tm5ts & ag5cies4    
7f7 ,access = biom$ical rese>* ,!       
,secret>y %all make data collect$ "u ?is
 section available = purposes (         
biom$ical rese>* z det]m9$ appropriate  
by ! ,secret>y1 to ! ext5t p]mitt$ by   
applicable laws1 & 9 a mann] t protects 
p]sonal privacy4  7g7 ,reports  7#a7    
,int]im report ,n lat] ?an #a ye> aft] !
 date on :i* any regi/ry is e/abli%$ &  
op]ational "u ?is section1 ! ,secret>y  
%all submit an int]im report to !       
,committee on ,heal?1 ,education1       
,labor1 & ,p5sions ( ! ,s5ate & !       
,committee on ,en]gy & ,comm]ce ( !     

,h\se ( ,repres5tatives reg>d+ aggregate
 in=mation collect$ pursuant to ?is     
section & epidemiological analyses1 z   
appropriate4 ,su* report %all be po/$ on
 ! ,int]net website ( ! ,dep>tm5t (     
,heal? & ,human ,s]vices & %all be      
updat$ bi5nially !reaft]4  7#b7         
,implem5tation report ,n lat] ?an #d    
ye>s aft] ! date ( ! enactm5t ( ?is     
section1 ! ,secret>y %all submit a      
report to ! ,committee on ,heal?1       
,education1 ,labor1 & ,p5sions ( !      
,s5ate & ! ,committee on ,en]gy &       
,comm]ce ( ! ,h\se ( ,repres5tatives    
reg>d+ ! implem5tation ( ?is section4   
,su* report %all include in=mation on-- 
7,a7 ! developm5t & ma9t5ance ( any     
means ( collect+ neurological disease   
surveillance in=mation ga!r$ pursuant to
 ?is section2  7,b7 ! type ( in=mation  
collect$ & /or$2  7,c7 ! use &          
availability ( su* in=mation1 includ+   
guidel9es = su* use2 &  7,d7 ! use &    
coord9ation ( databases t collect or    
ma9ta9 in=mation on neurological        

diseases4  4  ,april #d1 #bjaf,report$ )
 an am5dm5t