{"id":22849,"date":"2015-09-27T19:19:18","date_gmt":"2015-09-27T17:19:18","guid":{"rendered":"http:\/\/www.invarena.cz\/?p=22849"},"modified":"2015-09-27T19:19:18","modified_gmt":"2015-09-27T17:19:18","slug":"registr-remus-zverejnil-nejnovejsi-data-o-roztrousene-skleroze-v-cr","status":"publish","type":"post","link":"https:\/\/www.invarena.cz\/?p=22849","title":{"rendered":"Registr ReMuS zve\u0159ejnil nejnov\u011bj\u0161\u00ed data o roztrou\u0161en\u00e9 skler\u00f3ze v \u010cR"},"content":{"rendered":"<p><strong>Diagn\u00f3zu G35 neboli roztrou\u0161enou skler\u00f3zu si ro\u010dn\u011b vyslechne p\u0159ibli\u017en\u011b tis\u00edc lid\u00ed. Nemoc se u nich projevuje v pr\u016fm\u011bru ve 30 letech. Vypl\u00fdv\u00e1 to z nejnov\u011bj\u0161\u00edch v\u00fdsledk\u016f jedin\u00e9ho celost\u00e1tn\u00edho Registru pacient\u016f s roztrou\u0161enou skler\u00f3zou ReMuS.<\/strong><br \/>\n<!--more--><br \/>\nRegistr sleduje v\u00e1\u017en\u00e9 autoimunitn\u00ed onemocn\u011bn\u00ed od kv\u011btna 2013. Od t\u00e9 doby vzrostl po\u010det pacient\u016f evidovan\u00fdch v registru t\u00e9m\u011b\u0159 p\u011btin\u00e1sobn\u011b. Moment\u00e1ln\u011b sleduje data 7 099 pacient\u016f z celkem 13 specializovan\u00fdch RS center a plo\u0161n\u011b z cel\u00e9 \u010cesk\u00e9 republiky.<br \/>\n\u201eJsme r\u00e1di, \u017ee se b\u011bhem dvou let poda\u0159ilo nastavit registr tak, \u017ee ji\u017e dnes zaji\u0161\u0165uje sb\u011br dat od sedmi tis\u00edc pacient\u016f. V brzk\u00e9 dob\u011b lze o\u010dek\u00e1vat, \u017ee pr\u016f\u0159ezov\u00e1 data budou dopln\u011bna o prvn\u00ed dlouhodob\u00e9 v\u00fdstupy, kter\u00e9 budou p\u0159in\u00e1\u0161et velmi d\u016fle\u017eit\u00e9 informace pro v\u011bdeck\u00e9 \u00fa\u010dely, poji\u0161\u0165ovny i zdravotn\u00ed instituce, \u201c uvedla Kate\u0159ina B\u00e9mov\u00e1 z Nada\u010dn\u00edho fondu IMPULS, kter\u00fd registr provozuje. V sou\u010dasn\u00e9 dob\u011b, i p\u0159es svou kr\u00e1tkou dobu p\u016fsobnosti, pat\u0159\u00ed \u010desk\u00fd registr u\u017e mezi presti\u017en\u00ed evropsk\u00e9 registry.<br \/>\nRoztrou\u0161en\u00e1 skler\u00f3za je velmi variabiln\u00ed onemocn\u011bn\u00ed, kter\u00e9 vede u drtiv\u00e9 v\u011bt\u0161iny pacient\u016f bez l\u00e9\u010dby k z\u00e1va\u017en\u00e9 invalidit\u011b. Nejsou zn\u00e1my p\u0159esn\u00e9 p\u0159\u00ed\u010diny jej\u00edho vzniku, nemoc nelze vyl\u00e9\u010dit. \u201eData z kontrolovan\u00fdch klinick\u00fdch studi\u00ed nazna\u010duj\u00ed, \u017ee nov\u00e9 l\u00e9ky, kter\u00e9 vstoupily na trh v pr\u016fb\u011bhu posledn\u00edch p\u011bti let, um\u00ed nemoc u velk\u00e9 \u010d\u00e1sti pacient\u016f velmi dob\u0159e stabilizovat, odd\u00e1lit invaliditu a p\u0159i v\u010dasn\u00e9m nasazen\u00ed prodlou\u017eit obdob\u00ed pr\u00e1ceschopnosti. K potvrzen\u00ed t\u011bchto trend\u016f u n\u00e1s je v\u0161ak zapot\u0159eb\u00ed nemoc sledovat dlouhodob\u011b, \u201c upozornila docentka Dana Hor\u00e1kov\u00e1, neurolo\u017eka RS centra V\u0161eobecn\u00e9 fakultn\u00ed nemocnice v Praze a odborn\u00fd garant registru s t\u00edm, \u017ee hlavn\u00ed p\u0159\u00ednos registru je pr\u00e1v\u011b v dlouhodobosti sb\u011bru dat.<br \/>\nReMuS potvrzuje ji\u017e nyn\u00ed trendy, kter\u00e9 uk\u00e1zaly registry v jin\u00fdch zem\u00edch \u2013 v\u011bt\u0161ina pacient\u016f (67, 8%), proch\u00e1zej\u00edc\u00edch biologickou l\u00e9\u010dbou, m\u016f\u017ee pracovat na pln\u00fd nebo \u010d\u00e1ste\u010dn\u00fd \u00favazek. Nejv\u011bt\u0161\u00ed d\u00edl pacient\u016f (36,1%) m\u00e1 jen lehk\u00e9 pot\u00ed\u017ee, kter\u00e9 nekomplikuj\u00ed b\u011b\u017en\u00fd \u017eivot. V ReMuSu je nyn\u00ed 7 099 pacient\u016f, t\u00e9m\u011b\u0159 72% nemocn\u00fdch jsou \u017eeny. Ve v\u0161ech centrech se l\u00e9\u010d\u00ed nejv\u00edce pacient\u016f ve v\u011bku 30 \u2013 40 let, v registru je nyn\u00ed 33 pacient\u016f mlad\u0161\u00edch 18 let a z nich osmi je m\u00e9n\u011b ne\u017e 15 let. Pr\u016fm\u011brn\u00fd v\u011bk v dob\u011b za\u010d\u00e1tku onemocn\u011bn\u00ed je 30,3 let, nemoc se v\u0161ak projevila u\u017e v necel\u00fdch 4 letech.<br \/>\nV prvn\u00ed f\u00e1zi registr zachycuje pacienty na n\u00e1kladn\u00e9 biologick\u00e9 l\u00e9\u010db\u011b, sledovan\u00e9 ve specializovan\u00fdch RS centrech. V dal\u0161\u00ed f\u00e1zi se zam\u011b\u0159\u00ed i na ostatn\u00ed pacienty RS center bez ohledu na f\u00e1zi nemoci a typ l\u00e9\u010dby. \u201eNejobt\u00ed\u017en\u011bj\u0161\u00edm \u00fakolem bude zmapovat nemocn\u00e9, kte\u0159\u00ed jsou sledov\u00e1n\u00ed v ostatn\u00edch ambulanc\u00edch a l\u00e9\u010debn\u00fdch za\u0159\u00edzen\u00edch,\u201c doplnila docentka Hor\u00e1kov\u00e1.<br \/>\nRegistr zve\u0159ej\u0148uje v\u00fdsledky dvakr\u00e1t ro\u010dn\u011b. Zpr\u00e1vy jsou publikov\u00e1ny na webov\u00fdch str\u00e1nk\u00e1ch Nada\u010dn\u00edho fondu IMPULS. Velk\u00fd v\u00fdznam m\u00e1 i prezentace registru a jeho v\u00fdsledk\u016f v r\u00e1mci celoevropsk\u00fdch registr\u016f a nadn\u00e1rodn\u00edch projekt\u016f.<br \/>\nV\u00edce na www.nfimpuls.cz<\/p>\n<p>O projektu ReMuS<br \/>\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 13 z celkem 15 center specializovan\u00fdch na l\u00e9\u010dbu tohoto onemocn\u011bn\u00ed. Organiz\u00e1torem je Nada\u010dn\u00ed fond IMPULS, kter\u00fd tento registr 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<p>O roztrou\u0161en\u00e9 skler\u00f3ze<br \/>\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.<br \/>\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<p>Informace o roztrou\u0161en\u00e9 skler\u00f3ze lze nal\u00e9zt na port\u00e1le www.rskompas.cz, www.aktivnizivot.cz \u010di www.multipleslerosis.cz<\/p>\n<p>Stanislava Beyerov\u00e1<br \/>\nTiskov\u00e1 zpr\u00e1va \u2013 Nada\u010dn\u00ed fond IMPULS<\/p>\n","protected":false},"excerpt":{"rendered":"<div class=\"mh-excerpt\"><p>Diagn\u00f3zu G35 neboli roztrou\u0161enou skler\u00f3zu si ro\u010dn\u011b vyslechne p\u0159ibli\u017en\u011b tis\u00edc lid\u00ed. Nemoc se u nich projevuje v pr\u016fm\u011bru ve 30 letech. Vypl\u00fdv\u00e1 to z nejnov\u011bj\u0161\u00edch <a class=\"mh-excerpt-more\" href=\"https:\/\/www.invarena.cz\/?p=22849\" title=\"Registr ReMuS zve\u0159ejnil nejnov\u011bj\u0161\u00ed data o roztrou\u0161en\u00e9 skler\u00f3ze v \u010cR\">[&#8230;]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":1457,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[11],"tags":[],"class_list":["post-22849","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-zdravi"],"_links":{"self":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/22849","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=22849"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/22849\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/1457"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=22849"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=22849"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=22849"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}