,i #aac? ,,congress #a/ ,session ,h4 ,r4 #ffj ,,9 ,,! ,,h\se ,,( ,,repres5tatives ,febru>y #ac1 #bjac ,ms4 ,lee ( ,cali=nia introduc$ ! foll[+ bill2 :i* 0 ref]r$ to ! ,committee on ,en]gy & ,comm]ce ,a ,,bill ,to am5d ! ,public ,heal? ,s]vice ,act to create a ,national ,neuromyelitis ,optica ,consortium to provide grants & coord9ate rese>* ) respect to ! causes (1 & risk factors associat$ )1 neuromyelitis optica1 & = o!r purposes4 #a4 ,%ort title ,?is ,act may be cit$ z ! ,neuromyelitis ,optica ,consortium ,act4 #b4 ,f9d+s ,congress f9ds ! foll[+3 7#a7 ,neuromyelitis optica 7,,nmo7 is a deva/at+ neurologic disease lead+ to bl9dness & p>alysis4 7#b7 ,!re are an e/imat$ #aa1jjj pati5ts ) ,,nmo 9 ! ,unit$ ,/ates4 7#c7 ,wom5 are affect$ #g to #i times m ?an m51 & a l>ge proportion ( ,,nmo pati5ts are ,african-,am]ican4 7#d7 ,! av]age age at diagnosis is #da ye>s1 b ! range is broad & includes *ildr5 z "y z #b ye>s ( age & adults z old z #hi ye>s ( age4 7#e7 ,,nmo incurs sub/antial co/s = affect$ pati5ts & _! families4 7#f7 ,! cause ( ,,nmo is unkn[n1 b x is hypo!siz$ to be autoimmune 9 nature4 7#g7 ,m ?an #ij p]c5t ( ,,nmo pati5ts w suff] recurr5t disease & accumulate neurologic disability4 7#h7 ,because ( _! relatively l[ ov]all incid5ce1 orphan diseases l ,,nmo frequ5tly d n receive suffici5t att5tion & rese>* fund+4 7#i7 ,no s+le in/itution has a suffici5t numb] ( pati5ts to indep5d5tly conduct rese>* t w adequately address ! cause ( ,,nmo4 7#aj7 ,!re has be5 no compreh5sive /udy analyz+ all relevant cl9ical1 biological1 & epidemiological aspects ( ,,nmo to id5tify pot5tial risk factors & biom>k]s = ,,nmo4 7#aa7 ,we c apply our und]/&+ ( ,,nmo to ! /udy ( o!r autoimmune diseases1 includ+ multiple scl]osis & sy/emic lupus ery!matosus4 #c4 ,s5se ( congress ,x is ! s5se ( ,congress t !re is a ne$-- 7#a7 to e/abli% & coord9ate a multic5t] rese>* ef=t bas$ on collaboration betwe5 regional consortia & gov]nm5tal & nongov]nm5tal entities 9 ord] to-- 7,a7 compreh5sively /udy ! causes ( ,,nmo2 & 7,b7 id5tify pot5tial biom>k]s ( disease activity2 & 7#b7 to enc\rage a collaborative ef=t among academic m$ical c5t]s ) epidemiological /udy gr\ps to ga!r compreh5sive & detail$ in=mation = ea* pati5t enroll$ 9 ^? gr\ps1 9 ord] to inve/igate environm5tal1 nutritional1 & g5etic factors ) respect to1 & ! pa?ological & epidemiological *>act]i/ics (1 ,,nmo4 #d4 ,e/abli%m5t ( ! national neuromyelitis optica consortium ,"p ,b ( title ,,iv ( ! ,public ,heal? ,s]vice ,act 7#db ,u4,s4,c4 #bhd et seq47 is am5d$ by add+ aft] section #dji;,j ! foll[+ new section3 #dji,k4 ,national neuromyelitis optica consortium 7a7 ,e/abli%m5t ( ! national neuromyelitis optica consortium 7#a7 ,9 g5]al ,n lat] ?an #a ye> aft] ! date ( ! enactm5t ( ?is section1 ! ,secret>y1 act+ ?r\gh ! ,director ( ,,nih1 & 9 coord9ation ) ! ,director ( ! ,national ,in/itute on ,m9ority ,heal? & ,heal? ,disp>ities1 %all e/abli%1 adm9i/]1 & coord9ate a ,national ,neuromyelitis ,optica ,consortium 79 ?is section ref]r$ to z ! ,,nno ,consortium7 = ! purposes describ$ 9 p>agraph 7#b74 7#b7 ,purposes ,! purposes ( ! ,,nno ,consortium %all be ! foll[+3 7,a7 ,provid+ grants ( n few] ?an #e ye>s duration to eligible consortia = ! purpose ( conduct+ rese>* ) respect to ! causes (1 & ! risk factors & biom>k]s associat$ )1 ,,nmo4 7,b7 ,assembl+ a panel ( exp]ts to provide1 ) respect to rese>* fund$ by ! ,,nno ,consortium1 ongo+ guidance & recomm5dations = ! developm5t ( ! foll[+3 7i7 ,a common /udy design4 7ii7 ,/&>d protocols1 me?ods1 proc$ures1 & assays = collect+ f individuals enroll$ z /udy p>ticipants a m9imum dataset t includes ! foll[+3 7,i7 ,complete m$ical hi/ory4 7,,ii7 ,neurologic exam9ation4 7,,iii7 ,biospecim5s1 includ+ blood1 sp9al fluid1 ,,dna1 & ,,rna4 7,,iv7 ,radiological data includ+ magnetic resonance imag+ 7,,mri74 7iii7 ,specific analytical me?ods = exam9+ data4 7iv7 ,provisions = cons5sus review ( enroll$ cases4 7v7 ,an integrat$ data collection network4 7,c7 ,designat+ a c5tral laboratory to collect1 analyze1 & aggregate data ) respect to rese>* fund$ by ! ,,nno ,consortium & to make su* data & analysis available to rese>*]s4 7#c7 ,eligible consortia ,to be eligible = a grant "u ?is section1 a consortium %all demon/rate ! foll[+3 7,a7 ,! consortium has ! capability to enroll z rese>* p>ticipants a m9imum ( #be individuals ) a diagnosis ( ,,nmo f ! consortium's designat$ cat*m5t area4 7,b7 ,! designat$ cat*m5t area ( ! consortium does n ov]lap ) ! designat$ cat*m5t area ( ano!r consortium already receiv+ a grant "u ?is section4 7#d7 ,report ,n lat] ?an #a ye> aft] ! date ( ! enactm5t ( ?is section & annually !reaft]1 ! ,secret>y1 act+ ?r\gh ! ,director ( ,,nih1 %all submit to ,congress a report ) respect to ! ,,nno ,consortium1 to be made publicly available1 includ+ a summ>y ( rese>* fund$ by ! ,,nno ,consortium & a li/ ( consortia receiv+ grants ?r\gh ! ,,nno ,consortium4 ,at ! discretion ( ! ,secret>y1 su* report may be comb9$ ) o!r simil> or exi/+ reports4 7#e7 ,au?orization ( appropriations 7,a7 ,9 g5]al ,!re is au?oriz$ to be appropriat$ #be1jjj1jjj = ea* ( fiscal ye>s #bjad ?r\gh #bjah1 to rema9 available until exp5d$1 to c>ry out ?is section4 7,b7 ,s5se ( congress ,x is ! s5se ( ,congress t funds appropriat$ to c>ry out ?is section %\ld be 9 addition to funds o!rwise available or appropriat$ to c>ry out ! activities describ$ 9 ?is section4 7b7 ,def9itions ,= purposes ( ?is section3 7#a7 ,cat*m5t area ,! t]m cat*m5t area means a def9$ area = :i* population data are available4 7#b7 ,consortium ,! t]m consortium means a p>tn]%ip ( #b or m univ]sities1 heal? c>e organizations1 or gov]nm5t ag5cies1 or any comb9ation ( su* entities1 s]v+ a designat$ cat*m5t area4 4