{"id":30366,"date":"2018-04-10T20:00:25","date_gmt":"2018-04-10T18:00:25","guid":{"rendered":"http:\/\/www.invarena.cz\/?p=30366"},"modified":"2018-04-10T20:12:47","modified_gmt":"2018-04-10T18:12:47","slug":"registr-pacientu-s-roztrousenou-sklerozou-pomuze-zlepsit-lecbu","status":"publish","type":"post","link":"https:\/\/www.invarena.cz\/?p=30366","title":{"rendered":"Registr pacient\u016f s roztrou\u0161enou skler\u00f3zou pom\u016f\u017ee zlep\u0161it l\u00e9\u010dbu"},"content":{"rendered":"<p><strong>U\u017e p\u0159es 13 000 lid\u00ed je v Registru pacient\u016f s roztrou\u0161enou skler\u00f3zou (ReMuS). Bl\u00ed\u017e\u00ed se tak chv\u00edle, na ni\u017e netrp\u011bliv\u011b \u010dekaj\u00ed l\u00e9ka\u0159i, regul\u00e1to\u0159i, poji\u0161\u0165ovny, pacienti i farmaceutick\u00e9 firmy. Jakmile registr zmapuje v\u0161echny, kte\u0159\u00ed touto nevyl\u00e9\u010ditelnou, chronickou autoimunitn\u00ed chorobou trp\u00ed, bude mo\u017en\u00e9 analyzovat, jak se nemoc vyv\u00edj\u00ed. Roste tak \u0161ance d\u00e1t konkr\u00e9tn\u00edmu \u010dlov\u011bku p\u0159esn\u011b ten l\u00e9k, kter\u00fd mu vyhovuje. V\u010dasn\u00e1 l\u00e9\u010dba, vhodn\u00e1 pro aktu\u00e1ln\u00ed stav nemoci, m\u016f\u017ee pacient\u016fm zachr\u00e1nit des\u00edtky let aktivn\u00edho \u017eivota.<\/strong><br \/>\n<!--more--><br \/>\n\u201eMedic\u00edna jde m\u00edlov\u00fdmi kroky kup\u0159edu. M\u00e1me na v\u00fdb\u011br mezi \u0159adou kvalitn\u00edch l\u00e9k\u016f. V sou\u010dasn\u00e9 dob\u011b je ale t\u011b\u017ek\u00e9 rozeznat, komu d\u00e1t agresivn\u00ed l\u00e9\u010dbu hned v po\u010d\u00e1tku nemoci, kdo ji m\u00e1 dostat pozd\u011bji nebo t\u0159eba v\u016fbec. K takov\u00fdm rozhodnut\u00edm n\u00e1m v budoucnu data z registru ReMuS pomohou. Na\u0161i pacienti jsou mlad\u00ed, za svoji nemoc nemohou, neexistuje prevence, pr\u016fb\u011bh nemoci sami neovlivn\u00ed. V\u010dasn\u00e1, vhodn\u00e1 l\u00e9\u010dba zachr\u00e1n\u00ed 20\u201330 let aktivn\u00edho \u017eivota,\u201c \u0159\u00edk\u00e1 odborn\u00e1 garantka ReMuSu, neurolo\u017eka doc. MUDr. Dana Hor\u00e1kov\u00e1, Ph.D. Nyn\u00ed registr pln\u00ed daty v\u0161ech patn\u00e1ct center pro l\u00e9\u010dbu RS a spravuje jej Nada\u010dn\u00ed fond IMPULS.<br \/>\nReMuS mapuje 90 % v\u0161ech nemocn\u00fdch, kte\u0159\u00ed maj\u00ed biologickou l\u00e9\u010dbu (10 230), a \u010d\u00e1st t\u011bch, kte\u0159\u00ed modern\u00ed l\u00e9\u010dbu nemaj\u00ed (2 019). Odborn\u00edci odhaduj\u00ed, \u017ee v tuzemsku je kolem 20 000 lid\u00ed s roztrou\u0161enou skler\u00f3zou. \u201eV\u011b\u0159\u00edme, \u017ee do dvou let budeme m\u00edt podchycenu v\u011bt\u0161inu pacient\u016f sledovan\u00fdch v RS centrech,\u201c dopl\u0148uje doc. Hor\u00e1kov\u00e1.<br \/>\nV\u00fdznamn\u00fd p\u0159\u00ednos registru ReMuS spo\u010d\u00edv\u00e1 tak\u00e9 v ochran\u011b pacient\u016f s RS p\u0159ed p\u0159\u00edpadn\u00fdmi ne\u017e\u00e1douc\u00edmi \u00fa\u010dinky l\u00e9\u010dby. Podle prof. Evy Kubala Havrdov\u00e9, vedouc\u00ed nejv\u011bt\u0161\u00edho \u010desk\u00e9ho RS centra p\u0159i V\u0161eobecn\u00e9 fakultn\u00ed nemocnici v Praze, chce Evropsk\u00e1 agentura pro l\u00e9\u010div\u00e9 p\u0159\u00edpravky (EMA) hodnotit dlouhodobou bezpe\u010dnost a \u00fa\u010dinnost l\u00e9\u010dby pr\u00e1v\u011b cestou nez\u00e1visl\u00fdch registr\u016f. \u201eJe tady maxim\u00e1ln\u00ed snaha m\u00edt registry v\u00e1zan\u00e9 k p\u0159\u00edslu\u0161n\u00e9 nemoci, a ne ke konkr\u00e9tn\u00edmu l\u00e9ku,\u201c dopl\u0148uje prof. Kubala Havrdov\u00e1. N\u00e1rodn\u00ed registr je podle specialist\u016f kl\u00ed\u010dov\u00fd ve sb\u011bru platn\u00fdch dat t\u00fdkaj\u00edc\u00edch se \u00fa\u010dinnosti a bezpe\u010dnosti l\u00e9\u010dby. \u201e\u010cesk\u00e1 republika pat\u0159\u00ed mezi p\u011bt zem\u00ed s nejpresti\u017en\u011bj\u0161\u00edmi registry v Evrop\u011b, cennost registru pak spo\u010d\u00edv\u00e1 p\u0159edev\u0161\u00edm v kontrole a ov\u011b\u0159ov\u00e1n\u00ed dat,\u201c dod\u00e1v\u00e1 Jana Voj\u00e1\u010dkov\u00e1 z Nada\u010dn\u00edho fondu IMPULS.<br \/>\nPodle nejnov\u011bj\u0161\u00edch, nyn\u00ed poprv\u00e9 zve\u0159ejn\u011bn\u00fdch dat jsou mezi nemocn\u00fdmi RS ze 71,7 % \u017eeny. Nemoc se nej\u010dast\u011bji projev\u00ed ve 31. roce. V\u011bt\u0161ina pacient\u016f s biologickou l\u00e9\u010dbou \u2013 73,9 % \u2013 pracuje na pln\u00fd nebo c\u030c\u00e1stec\u030cn\u00fd \u00favazek a jen 34,1 % je v invalidn\u00edm d\u016fchodu. P\u0159esn\u011b 6 pacient\u016fm je m\u00e9n\u011b ne\u017e 15 let. Nejv\u00edce, 3 002 pacient\u016f, se l\u00e9\u010d\u00ed v RS centru ve V\u0161eobecn\u00e9 fakultn\u00ed nemocnici v Praze, co\u017e p\u0159edstavuje 23,1 % ze v\u0161ech sledovan\u00fdch. Data z registru tak\u00e9 ukazuj\u00ed rozd\u00edly mezi t\u011bmi, kte\u0159\u00ed jsou na biologick\u00e9 l\u00e9\u010db\u011b, a t\u011bmi, kte\u0159\u00ed na biologick\u00e9 l\u00e9\u010db\u011b nejsou. Zat\u00edmco 56,4 % pacient\u016f na modern\u00ed l\u00e9\u010db\u011b nevyu\u017e\u00edv\u00e1 soci\u00e1ln\u00ed d\u00e1vky, u t\u011bch bez biologick\u00e9 l\u00e9\u010dby je to pouze 25,4 %.<br \/>\nZ\u0159izovatelem registru ReMuS je Nada\u010dn\u00ed fond IMPULS, kter\u00fd jej financuje z dar\u016f. Odborn\u00fdm garantem registru je Sekce klinick\u00e9 neuroimunologie a likvorologie (SKNIL) \u010cesk\u00e9 neurologick\u00e9 spole\u010dnosti \u010cLS JEP. Jednotliv\u00e9 zpr\u00e1vy z registru lze dohledat na str\u00e1nk\u00e1ch www.nfimpuls.cz.<br \/>\nO 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. 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. Na cel\u00e9m sv\u011bt\u011b trp\u00ed RS 2,5 mili\u00f3nu nemocn\u00fdch, v \u010cesku se odhaduje po\u010det pacient\u016f na 20 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 (Ebstein-Barrov\u00e9 virus), kou\u0159en\u00ed a nedostatek vitaminu D. Informace o roztrou\u0161en\u00e9 skler\u00f3ze lze nal\u00e9zt i na port\u00e1le www.rskompas.cz.<\/p>\n<p>O Nada\u010dn\u00edm fondu IMPULS<br \/>\nNada\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 mozkom\u00ed\u0161n\u00ed v \u010cR. P\u0159isp\u00edv\u00e1 zejm\u00e9na na fyzioterapii a psychoterapii, kter\u00e9 nejsou hrazeny z ve\u0159ejn\u00e9ho zdravotn\u00edho poji\u0161t\u011bn\u00ed, v\u011bnuje se podpo\u0159e vzd\u011bl\u00e1v\u00e1n\u00ed a osv\u011btov\u00e9 \u010dinnosti. Jako jedin\u00e1 nest\u00e1tn\u00ed neziskov\u00e1 organizace v EU je z\u0159izovatelem celost\u00e1tn\u00edho Registru pacient\u016f s roztrou\u0161enou skler\u00f3zou (ReMuS) a jeho financov\u00e1n\u00ed zaji\u0161\u0165uje z vlastn\u00edch zdroj\u016f. V\u00edce informac\u00ed na www.nfimpuls.cz.<\/p>\n<p>Tiskov\u00e1 zpr\u00e1va<\/p>\n","protected":false},"excerpt":{"rendered":"<div class=\"mh-excerpt\"><p>U\u017e p\u0159es 13 000 lid\u00ed je v Registru pacient\u016f s roztrou\u0161enou skler\u00f3zou (ReMuS). Bl\u00ed\u017e\u00ed se tak chv\u00edle, na ni\u017e netrp\u011bliv\u011b \u010dekaj\u00ed l\u00e9ka\u0159i, regul\u00e1to\u0159i, poji\u0161\u0165ovny, pacienti <a class=\"mh-excerpt-more\" href=\"https:\/\/www.invarena.cz\/?p=30366\" title=\"Registr pacient\u016f s roztrou\u0161enou skler\u00f3zou pom\u016f\u017ee zlep\u0161it l\u00e9\u010dbu\">[&#8230;]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":16394,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[11],"tags":[],"class_list":["post-30366","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\/30366","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=30366"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/30366\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/16394"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=30366"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=30366"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=30366"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}