Do registru ReMuS se od kv\u011btna 2013 zapojilo 85% v\u0161ech pacient\u016f s roztrou\u0161enou skler\u00f3zou (RS), kte\u0159\u00ed u\u017e\u00edvaj\u00ed nejmodern\u011bj\u0161\u00ed biologickou l\u00e9\u010dbu. Podle nejnov\u011bj\u0161\u00edch v\u00fdstup\u016f t\u00e9m\u011b\u0159 dv\u011b t\u0159etiny z nich pracuj\u00ed na pln\u00fd \u010di \u010d\u00e1ste\u010dn\u00fd \u00favazek. Tak\u00e9 prvn\u00ed socioekonomick\u00e9 anal\u00fdzy, kter\u00e9 nechal zpracovat spr\u00e1vce registru Nada\u010dn\u00ed fond IMPULS, potvrzuj\u00ed, \u017ee pod\u00edl ekonomicky aktivn\u00edch lid\u00ed se mezi pacienty t\u00e9m\u011b\u0159 neli\u0161\u00ed od celorepublikov\u00e9ho pr\u016fm\u011bru.
\n
\n\u010cesk\u00e1 republika pat\u0159\u00ed k zem\u00edm s vysok\u00fdm v\u00fdskytem RS. V posledn\u00edch letech se u n\u00e1s diagnostikuje kolem 700 nov\u00fdch pacient\u016f ro\u010dn\u011b, s nevyl\u00e9\u010ditelnou chorobou jich bojuje odhadem 17 tis\u00edc. P\u0159ibli\u017en\u011b 10 tis\u00edc z nich u\u017e\u00edv\u00e1 nejmodern\u011bj\u0161\u00ed l\u00e9\u010dbu, kter\u00e1 dok\u00e1\u017ee odd\u00e1lit invaliditu a udr\u017eet je d\u00e9le aktivn\u00ed. \u201eUk\u00e1zalo se, \u017ee 73% pacient\u016f s biologickou l\u00e9\u010dbou je pr\u00e1ceschopn\u00fdch, co\u017e je t\u00e9m\u011b\u0159 stejn\u00fd pod\u00edl jako u celkov\u00e9 populace v \u010cR,\u201c vysv\u011btluje Kate\u0159ina B\u00e9mov\u00e1 z Nada\u010dn\u00edho fondu IMPULS.
\nPodle doc. MUDr. Dany Hor\u00e1kov\u00e9, Ph.D., neurolo\u017eky RS centra p\u0159i V\u0161eobecn\u00e9 fakultn\u00ed nemocnici v Praze a odborn\u00e9 garantky projektu, je nejv\u011bt\u0161\u00ed v\u00fdznam registru v tom, \u017ee ji\u017e nyn\u00ed p\u0159in\u00e1\u0161\u00ed cenn\u00e1 data z re\u00e1ln\u00e9 praxe. Ta se maj\u00ed st\u00e1t podkladem pro jedn\u00e1n\u00ed o zp\u0159\u00edstupn\u011bn\u00ed modern\u00ed l\u00e9\u010dby v\u0161em pacient\u016fm, kte\u0159\u00ed ji pot\u0159ebuj\u00ed. \u201eObjem pen\u011bz na zdravotn\u00ed p\u00e9\u010di nen\u00ed nekone\u010dn\u00fd, p\u0159i sou\u010dasn\u00fdch medic\u00ednsk\u00fdch mo\u017enostech mus\u00edme opravdu prov\u00e1d\u011bt rozhodnut\u00ed, kter\u00e1 skupina obyvatel bude z konkr\u00e9tn\u00ed n\u00e1kladn\u00e9 zdravotn\u00ed p\u00e9\u010de nejv\u00edce profitovat. Rozhodnut\u00ed mus\u00ed b\u00fdt podlo\u017eena kvalitn\u00edmi odborn\u00fdmi a farmakoekonomick\u00fdmi \u00fadaji, data z registru p\u0159itom p\u0159edstavuj\u00ed zcela kl\u00ed\u010dov\u00fd zdroj informac\u00ed,“ vysv\u011btlila docentka Hor\u00e1kov\u00e1. Nem\u00e9n\u011b d\u016fle\u017eitou roli hraj\u00ed data z registru pro medic\u00ednsk\u00fd v\u00fdzkum, ale p\u0159inesou i pou\u010den\u00ed o tom, kdy je nejefektivn\u011bj\u0161\u00ed zm\u011bnit l\u00e9\u010debn\u00fd re\u017eim \u010di l\u00e9\u010dbu eskalovat.
\nPo 3 letech fungov\u00e1n\u00ed sleduje registr 8 353 pacient\u016f na biologick\u00e9 l\u00e9\u010db\u011b z cel\u00e9 \u010cesk\u00e9 republiky, kte\u0159\u00ed se l\u00e9\u010d\u00ed v jednom ze 14 specializovan\u00fdch center. Do konce roku p\u0159ibudou i data od des\u00edtek pacient\u016f z posledn\u00edho zb\u00fdvaj\u00edc\u00edho RS centra v Brn\u011b u Sv. Anny. Ve srovn\u00e1n\u00ed s prvn\u00edm v\u00fdstupem dat z roku 2013 je nyn\u00ed v registru v\u00edce ne\u017e p\u011btin\u00e1sobn\u00e9 mno\u017estv\u00ed pacient\u016f a zv\u00fd\u0161ila se variabilita pacient\u016f a jejich l\u00e9\u010dby. Nejprve se registr zam\u011b\u0159il na pacienty s modern\u00ed imunomodula\u010dn\u00ed neboli biologickou l\u00e9\u010dbou, nyn\u00ed sb\u00edr\u00e1 data od v\u0161ech pacient\u016f sledovan\u00fdch v RS centrech.
\nAktu\u00e1ln\u00ed souhrnn\u00e1 anal\u00fdza registru ukazuje, \u017ee nejv\u00edce pacient\u016f s biologickou l\u00e9\u010dbou v registru je z Prahy a St\u0159edo\u010desk\u00e9ho kraje, d\u00e1le Moravskoslezsk\u00e9ho a \u00dasteck\u00e9ho kraje. Dv\u011b t\u0159etiny z nich tvo\u0159\u00ed \u017eeny. Nemoc se objevuje v pr\u016fm\u011bru ve 30,6 letech, v\u011bk lid\u00ed p\u0159i za\u010d\u00e1tku nemoci se v\u0161ak pohybuje od 3 do 67 let. V registru je aktu\u00e1ln\u011b 33 pacient\u016f mlad\u0161\u00edch 18 let. T\u00e9m\u011b\u0159 70 % pacient\u016f je schopn\u00fdch pr\u00e1ce, a to bu\u010f na pln\u00fd, nebo \u010d\u00e1ste\u010dn\u00fd \u00favazek, zhruba 32 % pob\u00edr\u00e1 invalidn\u00ed d\u016fchod. V\u00edce ne\u017e polovina (55,3 %) pacient\u016f nepob\u00edr\u00e1 \u017e\u00e1dn\u00e9 soci\u00e1ln\u00ed d\u00e1vky. Nejpo\u010detn\u011bj\u0161\u00ed skupinou z hlediska stupn\u011b posti\u017een\u00ed jsou lid\u00e9 s EDSS mezi 1,5 a 2, tedy s m\u00edrn\u00fdmi pot\u00ed\u017eemi, minim\u00e1ln\u011b dot\u010denou v\u00fdkonnost\u00ed a s pouze nepatrn\u00fdmi odchylkami v neurologick\u00e9m n\u00e1lezu. Druh\u00fd nejv\u011bt\u0161\u00ed po\u010det pacient\u016f (1 483) jsou ti, co se pot\u00fdkaj\u00ed s v\u00fdrazn\u011bj\u0161\u00edm posti\u017een\u00edm, dot\u010denou hybnost\u00ed a v\u00fdkonnost\u00ed, ale se zachovanou schopnost\u00ed pracovat. Registr tak\u00e9 uk\u00e1zal po\u010dty porod\u016f \u2013 v hodnocen\u00e9m obdob\u00ed od 1. 1. 2016 do 30. 6. 2016 porodilo celkem 51 pacientek s RS.
\nV\u00fdsledky jsou publikov\u00e1ny dvakr\u00e1t ro\u010dn\u011b na www.nfimpuls.cz.<\/p>\n
O projektu ReMuS
\nCelost\u00e1tn\u00ed registr pacient\u016f s roztrou\u0161enou skler\u00f3zou (ReMuS) shroma\u017e\u010fuje od roku 2013 data o v\u00fdvoji nemoci, \u00fa\u010dinc\u00edch konkr\u00e9tn\u00edch l\u00e9k\u016f a bezpe\u010dnosti dlouhodob\u00e9 l\u00e9\u010dby. V sou\u010dasnosti je do n\u011bj zapojeno v\u0161ech 15 center specializovan\u00fdch na l\u00e9\u010dbu tohoto onemocn\u011bn\u00ed, v anal\u00fdze jsou zat\u00edm zpracov\u00e1na data ze 14 z nich. Spr\u00e1vcem a provozovatelem registru je Nada\u010dn\u00ed fond IMPULS, kter\u00fd jej financuje z dar\u016f. Odborn\u00fdm garantem registru je Sekce neuroimunologie a likvorologie (SNIL) \u010cesk\u00e9 neurologick\u00e9 spole\u010dnosti. Nada\u010dn\u00ed fond IMPULS vznikl v roce 2000. Jeho c\u00edlem je podporovat projekty v oblasti v\u011bdy, v\u00fdzkumu a terapie pacient\u016f s roztrou\u0161enou skler\u00f3zou v \u010cR.<\/p>\n
O roztrou\u0161en\u00e9 skler\u00f3ze
\nRoztrou\u0161en\u00e1 skler\u00f3za je chronick\u00e9 z\u00e1n\u011btliv\u00e9 onemocn\u011bn\u00ed centr\u00e1ln\u00edho nervov\u00e9ho syst\u00e9mu, jeho\u017e p\u0159\u00ed\u010dina nen\u00ed doposud zn\u00e1ma. P\u0159i RS je po\u0161kozov\u00e1n ochrann\u00fd myelin pokr\u00fdvaj\u00edc\u00ed nervov\u00e1 vl\u00e1kna, co\u017e zp\u016fsobuje po\u0161kozen\u00ed pochvy nervov\u00fdch vl\u00e1ken i vl\u00e1ken samotn\u00fdch. Toto onemocn\u011bn\u00ed propuk\u00e1 v\u011bt\u0161inou v mlad\u0161\u00edm v\u011bku, \u010dast\u011bji postihuje \u017eeny. Pro RS je typick\u00e9 st\u0159\u00edd\u00e1n\u00ed obdob\u00ed z\u00e1chvat\u016f (atak) a obdob\u00ed zd\u00e1nliv\u00e9ho klidu. Tento proces je nep\u0159edv\u00eddateln\u00fd, a proto i l\u00e9\u010dba \u010di prevence je t\u011b\u017ek\u00e1. P\u0159i atace je pacient l\u00e9\u010den symptomaticky, aby se zm\u00edrnily p\u0159\u00edznaky onemocn\u011bn\u00ed.
\nNa cel\u00e9m sv\u011bt\u011b RS trp\u00ed dva a p\u016fl milion\u016f nemocn\u00fdch, v \u010cesku se odhaduje po\u010det pacient\u016f na 17 tis\u00edc. Nemoc se vyskytuje hlavn\u011b ve st\u0159edn\u00edch a chladn\u011bj\u0161\u00edch zem\u011bpisn\u00fdch \u0161\u00ed\u0159k\u00e1ch. Rizikov\u00fdmi faktory nemoci jsou krom\u011b genetick\u00e9 dispozice EB virus (zp\u016fsobuj\u00edc\u00ed infek\u010dn\u00ed mononukle\u00f3zu), kou\u0159en\u00ed a nedostatek vitaminu D. Podle epidemiologick\u00fdch pr\u016fzkum\u016f se v \u010cR nejv\u00edce vyskytuje RS na severu \u010cech. L\u00e9ka\u0159i to p\u0159isuzuj\u00ed zhor\u0161en\u00e9mu \u017eivotn\u00edmu prost\u0159ed\u00edm v t\u00e9to oblasti.<\/p>\n
Informace o roztrou\u0161en\u00e9 skler\u00f3ze lze nal\u00e9zt na port\u00e1le www.multipleslerosis.cz,
\nwww.rskompas.cz nebo www.aktivnizivot.cz.<\/p>\n
Mgr. Stanislava Beyerov\u00e1,
\nTiskov\u00e1 zpr\u00e1va NF IMPULS.<\/p>\n","protected":false},"excerpt":{"rendered":"
Do registru ReMuS se od kv\u011btna 2013 zapojilo 85% v\u0161ech pacient\u016f s roztrou\u0161enou skler\u00f3zou (RS), kte\u0159\u00ed u\u017e\u00edvaj\u00ed nejmodern\u011bj\u0161\u00ed biologickou l\u00e9\u010dbu. Podle nejnov\u011bj\u0161\u00edch v\u00fdstup\u016f t\u00e9m\u011b\u0159 dv\u011b […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":17230,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[11,9],"tags":[],"class_list":["post-26393","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-zdravi","category-zpravy"],"_links":{"self":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/26393","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=26393"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/26393\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/17230"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=26393"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=26393"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=26393"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}