,i #aae? ,,congress #b;d ,session ,h4 ,r4 #eaae ,,9 ,,! ,,h\se ,,( ,,repres5tatives ,febru>y #bg1 #bjah,mr4 ,c>son ( ,indiana 7= himself & ,mr4 ,co/ello ( ,p5nsylvania7 introduc$ ! foll[+ bill2 :i* 0 ref]r$ to ! ,committee on ,en]gy & ,comm]ce ,a ,,bill ,to exp& & improve ! programs & activities ( ! ,dep>tm5t ( ,heal? & ,human ,s]vices = aw>5ess1 education1 rese>*1 surveillance1 diagnosis1 & treatm5t conc]n+ r>e diseases & conditions4 #a4 ,%ort title ,?is ,act may be cit$ z ! ,r>e disease ,advancem5t1 ,rese>*1 & ,education ,act ( #bjah or ! ,,r>e ,act ( #bjah4 #b4 ,improv+ programs & activities ( ,,hhs conc]n+ r>e diseases & conditions 7a7 ,,nih ,p>agraph 7#a7 ( section #djb;,a7a7 ( ! ,public ,heal? ,s]vice ,act 7#db ,u4,s4,c4 #bhb;a7a77 is am5d$ by add+ at ! end ! foll[+3 ,9 addition to ! am\nts au?oriz$ to be appropriat$ by ! prec$+ s5t5ce1 !re is au?oriz$ to be appropriat$ #aj1jjj1jjj = ea* ( fiscal ye>s #bjai ?r\gh #bjbc = c>ry+ out section #dha;,a 7relat+ to r>e disease regional c5t]s ( excell5ce74 4 7b7 ,,cdc surveillance ( r>e diseases & conditions ,title ,,iii ( ! ,public ,heal? ,s]vice ,act is am5d$ by ins]t+ aft] section #cag,t ( su* ,act 7#db ,u4,s4,c4 #bdg;b-#bb7 ! foll[+3 #cag,u ,,cdc surveillance ( r>e diseases & conditions 7a7 ,9 ,g5]al ,! ,secret>y1 act+ ?r\gh ! ,director ( ! ,c5t]s = ,disease ,control & ,prev5tion & 9 coord9ation ) o!r ag5cies z ! ,secret>y det]m9es1 %all1 z appropriate-- 7#a7 enhance & exp& infra/ructure & activities to track ! epidemiology ( r>e diseases & conditions2 & 7#b7 incorporate in=mation obta9$ ?r\gh su* activities into an integrat$ surveillance sy/em1 :i* may consi/ ( or include a regi/ry1 to be kn[n z ! ,national ,r>e ,disease or ,condition ,surveillance ,sy/em4 7b7 ,rese>* ,! ,secret>y %all ensure t ! ,national ,r>e ,disease or ,condition ,surveillance ,sy/em is design$ 9 a mann] t facilitates fur!r rese>* on r>e diseases & conditions4 7c7 ,cont5t ,9 c>ry+ out subsection 7a71 ! ,secret>y-- 7#a7 %all provide = ! collection & /orage ( in=mation on ! incid5ce & preval5ce ( r>e diseases & conditions 9 ! ,unit$ ,/ates2 7#b7 to ! ext5t practicable1 %all provide = ! collection & /orage ( o!r available in=mation on r>e diseases & conditions1 includ+ in=mation relat$ to p]sons liv+ ) a r>e disease or condition :o *oose to p>ticipate1 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$ ) a r>e disease or condition1 su* z g5etic & environm5tal risk factors & o!r in=mation1 z appropriate2 & 7,c7 diagnosis & progression m>k]s2 7#c7 to ! ext5t practicable1 %all provide = ! collection & /orage ( in=mation relevant to analysis on r>e diseases & conditions1 su* z in=mation conc]n+-- 7,a7 ! natural hi/ory ( ! diseases & conditions2 7,b7 ! prev5tion ( ! diseases & conditions2 7,c7 ! detection1 managem5t1 & treatm5t approa*es = ! diseases & conditions2 & 7,d7 ! developm5t ( outcomes measures2 7#d7 may address issues id5tifi$ dur+ ! consultation process "u subsection 7d72 & 7#e7 initially may address a limit$ numb] ( r>e diseases or conditions4 7d7 ,consultation ,9 c>ry+ out ?is section1 ! ,secret>y %all consult ) individuals ) appropriate exp]tise1 :i* may include-- 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 r>e diseases or conditions2 & 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 r>e diseases or conditions2 7#e7 rese>* sci5ti/s ) exp]tise 9 r>e diseases or conditions1 or exp]i5ce conduct+ translational rese>* or utiliz+ surveillance sy/ems = sci5tific rese>* purposes2 & 7#f7 pati5ts & c>egiv]s ( pati5ts ) r>e diseases or conditions4 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$]al1 ,/ate1 & local ag5cies ,subject to subsection 7h71 ! ,secret>y %all-- 7#a7 make in=mation & analysis 9 ! ,national ,r>e ,disease or ,condition ,surveillance ,sy/em available1 z appropriate-- 7,a7 to ,f$]al dep>tm5ts & ag5cies1 su* z ! ,national ,in/itutes ( ,heal? & ! ,dep>tm5t ( ,vet]ans ,affairs2 & 7,b7 to ,/ate & local ag5cies2 & 7#b7 id5tify1 build ^u1 lev]age1 & coord9ate among exi/+ data & surveillance sy/ems1 surveys1 regi/ries1 & o!r ,f$]al public heal? infra/ructure1 :]ev] practicable4 7g7 ,public access ,subject to subsection 7h71 ! ,secret>y %all ensure t in=mation & analysis 9 ! ,national ,r>e ,disease or ,conditions ,surveillance ,sy/em are available1 z appropriate1 to ! public1 includ+ rese>*]s4 7h7 ,privacy ,! ,secret>y %all ensure t in=mation & analysis 9 ! ,national ,r>e ,disease or ,condition ,surveillance ,sy/em are made available only to ! ext5t p]mitt$ by applicable ,f$]al & ,/ate law1 & 9 a mann] t protects p]sonal privacy1 to ! ext5t requir$ by applicable ,f$]al & ,/ate privacy law1 at a m9imum4 7i7 ,reports 7#a7 ,report on in=mation & analyses ,n lat] ?an #a ye> aft] ! date on :i* any sy/em is e/abli%$ "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$ bi5nially4 7#b7 ,implem5tation 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 ,r>e ,disease or ,condition ,surveillance ,sy/em2 7,b7 ! type ( in=mation collect$ & /or$ 9 ! surveillance 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 r>e diseases or conditions4 7j7 ,def9itions ,9 ?is section3 7#a7 ,national volunt>y heal? association ,! 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$ ,/ates ) exp]i5ce s]v+ ! population ( individuals ) a r>e disease or condition & h demon/rat$ exp]i5ce 9 r>e disease or condition rese>*1 c>e1 & pati5t s]vices4 7#b7 ,r>e ,! t]m r>e1 ) respect to a disease or condition1 means affect+ few] ?an #bjj1jjj individuals 9 ! ,unit$ ,/ates4 7k7 ,au?orization ( ,appropriations ,to c>ry out ?is section1 !re are au?oriz$ to be appropriat$ #e1jjj1jjj = ea* ( fiscal ye>s #bjah ?r\gh #bjbc4 4 7c7 ,,ahrq heal? c>e provid] aw>5ess activities 7#a7 ,9 g5]al ,! ,director ( ! ,ag5cy = ,heal?c>e ,rese>* & ,quality %all exp& & int5sify ! activities ( ! ,ag5cy to increase ! aw>5ess & k ( heal? c>e provid]s ab\t r>e diseases & conditions4 7#b7 ,def9ition ,9 ?is subsection1 ! t]m r>e diseases & conditions ref]s to any disease or condition affect+ few] ?an #bjj1jjj individuals 9 ! ,unit$ ,/ates4 7d7 ,national ,academies report 7#a7 ,9 g5]al ,! ,secret>y ( ,heal? & ,human ,s]vices %all seek to ent] into an arrangem5t ) ! ,national ,academies 7or ano!r appropriate entity if ! ,national ,academies decl9e7 to update & republi%1 by n lat] ?an #c ye>s aft] ! date ( enactm5t ( ?is ,act1 ! #bjaj report ( ! ,national ,academies entitl$ ,r>e ,diseases & ,orphan ,products3 ,accel]at+ ,rese>* & ,developm5t4 7#b7 ,au?orization ( appropriations ,to c>ry out ?is subsection1 !re is au?oriz$ to be appropriat$ #a1jjj1jjj4