\u201eM\u00e1te roztrou\u0161enou skler\u00f3zu\u201c \u2013 tento verdikt usly\u0161\u00ed z \u00fast l\u00e9ka\u0159e a\u017e tis\u00edc lid\u00ed ro\u010dn\u011b. S chorobou, kterou nelze \u00fapln\u011b vyl\u00e9\u010dit, bojuje odhadem 17 tis\u00edc \u010cech\u016f, p\u0159ev\u00e1\u017en\u011b \u017een. Nejmodern\u011bj\u0161\u00ed l\u00e9ky, kter\u00e9 udr\u017e\u00ed pacienty d\u00e9le aktivn\u00ed, dostane ale pouze \u010d\u00e1st z nich \u2013 p\u0159ibli\u017en\u011b 9 tis\u00edc nemocn\u00fdch.
\n
\nilustra\u010dn\u00ed foto: sxc.hu<\/p>\n
To by mohl vy\u0159e\u0161it Registr pacient\u016f s roztrou\u0161enou skler\u00f3zou (ReMuS), kter\u00fd dnes publikuje prvn\u00ed rozs\u00e1hlej\u0161\u00ed data. Ta prokazuj\u00ed, \u017ee v\u010dasn\u00e9 nasazen\u00ed modern\u00ed l\u00e9\u010dby oddaluje invaliditu pacient\u016f. Do registru, kter\u00fd spravuje Nada\u010dn\u00ed fond IMPULS, vkl\u00e1daj\u00ed v\u0161echny pot\u0159ebn\u00e9 informace l\u00e9ka\u0159i a sestry z dvan\u00e1cti RS Center (Centra pro demyeliniza\u010dn\u00ed onemocn\u011bn\u00ed), kde se nemocn\u00ed l\u00e9\u010d\u00ed. <\/p>\n
\u201eRegistr vznikl relativn\u011b ned\u00e1vno, v kv\u011btnu 2013. Zat\u00edmco v jin\u00fdch zem\u00edch jej podporuje st\u00e1t, u n\u00e1s je financov\u00e1n pouze z nada\u010dn\u00edch zdroj\u016f. Jeho c\u00edlem je d\u016fkladn\u011b zmapovat nemoc, jej\u00ed pr\u016fb\u011bh, l\u00e9\u010dbu a v\u00fdsledky a prov\u00e1zat z\u00edskan\u00e9 informace s ostatn\u00edmi registry ve sv\u011bt\u011b,\u201c uvedla ing. Kate\u0159ina B\u00e9mov\u00e1, p\u0159edsedkyn\u011b spr\u00e1vn\u00ed rady Nada\u010dn\u00edho fondu IMPULS. <\/p>\n
Ve srovn\u00e1n\u00ed s prvn\u00edmi daty, publikovan\u00fdmi v \u010dervnu 2013, je nyn\u00ed v registru t\u00e9m\u011b\u0159 \u010dty\u0159n\u00e1sobn\u00e9 mno\u017estv\u00ed pacient\u016f. \u201eZahrani\u010dn\u00ed registry, kter\u00e9 shroma\u017e\u010fovaly \u00fadaje p\u0159ed \u00e9rou biologick\u00e9 l\u00e9\u010dby, deset a v\u00edce let zp\u00e1tky, dnes poskytuj\u00ed cenn\u00e9 informace o p\u0159irozen\u00e9m pr\u016fb\u011bhu nemoci, o tom, nakolik je modern\u00ed l\u00e9\u010dba schopna odd\u00e1lit invaliditu, zda rozhoduje jej\u00ed v\u010dasn\u00e9 zah\u00e1jen\u00ed a jak prodlu\u017euje obdob\u00ed pr\u00e1ceschopnosti. Jasn\u011b ukazuj\u00ed, \u017ee v\u010dasn\u00e9 nasazen\u00ed biologick\u00e9 l\u00e9\u010dby z\u00e1sadn\u011b oddaluje invaliditu pacient\u016f,\u201c vysv\u011btlila doc. MUDr. Dana Hor\u00e1kov\u00e1, Ph.D. z Centra pro demyeliniza\u010dn\u00ed onemocn\u011bn\u00ed 1. LF UK a VFN v Praze. <\/p>\n
Podle prof. MUDr. Evy Havrdov\u00e9, CSc., vedouc\u00ed RS Centra Neurologick\u00e9 kliniky 1. LF UK a VFN v Praze, p\u0159inese ReMuS siln\u00e9 argumenty pro poji\u0161\u0165ovny a dal\u0161\u00ed zdravotn\u00ed instituce, aby zp\u0159\u00edstupnily modern\u00ed efektivn\u00ed l\u00e9\u010dbu pacient\u016fm za podm\u00ednek, kter\u00e9 plat\u00ed ve vysp\u011bl\u00e9m sv\u011bt\u011b. \u201eZe zahrani\u010d\u00ed v\u00edme, \u017ee pacient, kter\u00fd dostane l\u00e9\u010dbu hned, po osmi letech v\u011bt\u0161inou norm\u00e1ln\u011b funguje a pracuje, zat\u00edmco pacient, kter\u00fd ji nedostane, je \u010dast\u011bji v daleko hor\u0161\u00edm stavu. <\/p>\n
M\u011bs\u00ed\u010dn\u011b stoj\u00ed l\u00e9\u010dba jednoho \u010dlov\u011bka s roztrou\u0161enou skler\u00f3zou 15 a\u017e 19 tis\u00edc korun, bez l\u00e9\u010dby se n\u00e1klady na n\u011bj \u010dasem vy\u0161plhaj\u00ed na dvojn\u00e1sobek,\u201c \u0159\u00edk\u00e1 prof. Havrdov\u00e1. Podle n\u00ed bolestn\u011b chyb\u00ed dlouhodob\u00e1 data. Pl\u00e1tci zdravotn\u00ed p\u00e9\u010de (poji\u0161\u0165ovny) sice dost\u00e1vaj\u00ed informace o pacientech od l\u00e9ka\u0159\u016f, ale pouze za posledn\u00edch 12 m\u011bs\u00edc\u016f, a to p\u0159esto, \u017ee lid\u00e9 jsou nemocn\u00ed dlouhodob\u011b.<\/p>\n
\u201eV pr\u016fm\u011bru se lid\u00e9 o diagn\u00f3ze dozv\u011bd\u00ed kolem t\u0159ic\u00edtky, do konce \u017eivota se j\u00ed u\u017e nezbav\u00ed. Hrajeme tady o ka\u017ed\u00fd den, abychom udr\u017eeli pacienty v pr\u00e1ci, aktivn\u00ed a bez p\u0159\u00edznak\u016f. A k tomu n\u00e1m pom\u00e1h\u00e1 biologick\u00e9 l\u00e9\u010dba. Ta se v\u0161ak bohu\u017eel nedostane a\u017e k tis\u00edcovce vhodn\u00fdch pacient\u016f a je\u0161t\u011b vy\u0161\u0161\u00edmu po\u010dtu nemocn\u00fdch, u kter\u00fdch dosud nezabrala dosavadn\u00ed l\u00e9\u010dba,\u201c doplnila p\u0159edn\u00ed \u010desk\u00e1 neurolo\u017eka Eva Havrdov\u00e1. Krit\u00e9ria pro nasazen\u00ed l\u00e9\u010dby jsou dle l\u00e9ka\u0159ek v \u010cR st\u00e1le podstatn\u011b p\u0159\u00edsn\u011bj\u0161\u00ed, ne\u017e ve vysp\u011bl\u00fdch zem\u00edch a \u0159ada pacient\u016f dostane sv\u016fj l\u00e9k pozd\u011b. <\/p>\n
IMPULS, nada\u010dn\u00ed fond, I\u010c 26169428, s\u00eddlo Kate\u0159insk\u00e1 30, 128 08 Praha 2
\nReMuS potvrzuje trendy, kter\u00e9 uk\u00e1zaly registry v jin\u00fdch zem\u00edch -v\u011bt\u0161ina pacient\u016f (68,8 %), 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 (36,5 %) m\u00e1 jen lehk\u00e9 pot\u00ed\u017ee, kter\u00e9 nekomplikuj\u00ed b\u011b\u017en\u00fd \u017eivot. ReMuS ukazuje, \u017ee s pomoc\u00ed biologick\u00e9 l\u00e9\u010dby lze zvl\u00e1dat i t\u011bhotenstv\u00ed. Za dobu, co registr existuje, u\u017e porodilo celkem 110 pacientek. V ReMuSu je nyn\u00ed t\u00e9m\u011b\u0159 6 tis\u00edc 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 a\u017e 40 let, v registru je nyn\u00ed 28 pacient\u016f mlad\u0161\u00edch 18 let a z nich \u010dty\u0159em je m\u00e9n\u011b ne\u017e 15 let. Pr\u016fm\u011brn\u00fd v\u011bk v dob\u011b za\u010d\u00e1tku onemocn\u011bn\u00ed je 30,2 let, nejmlad\u0161\u00ed sledovan\u00fd pacient m\u011bl v dob\u011b po\u010d\u00e1tku nemoci 3,5 roku. <\/p>\n
Nejv\u00edce sledovan\u00fdch nemocn\u00fdch (1 193), tedy p\u0159es 21 % je z Prahy, t\u011bsn\u011b za n\u00ed n\u00e1sleduj\u00ed St\u0159edn\u00ed \u010cechy s tis\u00edcovkou pacient\u016f. Na t\u0159et\u00ed p\u0159\u00ed\u010dce v pomysln\u00e9m \u017eeb\u0159\u00ed\u010dku po\u010dtu pacient\u016f s RS je \u00dasteck\u00fd (511) a Moravskoslezsk\u00fd kraj (419). <\/p>\n
Nejv\u00edce, p\u0159es 59 % pacient\u016f, jsou poji\u0161t\u011bnci V\u0161eobecn\u00e9 zdravotn\u00ed poji\u0161\u0165ovny. S postupn\u00fdm za\u0159azen\u00edm dal\u0161\u00edch pacient\u016f budou tato data p\u0159esn\u011bj\u0161\u00ed. Nyn\u00ed se registr zam\u011b\u0159uje na pacienty na dlouhodob\u00e9 biologick\u00e9 l\u00e9\u010db\u011b. V dal\u0161\u00ed f\u00e1zi zachyt\u00ed v\u0161echny pacienty sledovan\u00e9 v RS centrech bez ohledu na f\u00e1zi nemoci a typ l\u00e9\u010dby. N\u00e1sledn\u011b zmapuje pacienty, kte\u0159\u00ed nejsou sledov\u00e1ni v RS centrech \u2013 jejich nemoc je p\u0159\u00edli\u0161 pokro\u010dil\u00e1 nebo jej\u00ed pr\u016fb\u011bh m\u00edrn\u00fd.
\nKompletn\u00ed data z registru lze nal\u00e9zt na www.multiplesclerosis.cz.
\nO 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 \u2013 v sou\u010dasnosti je do n\u011bj zapojeno 12 z celkem 15 center specializovan\u00fdch na l\u00e9\u010dbu tohoto onemocn\u011bn\u00ed a zhruba 6 000 z celkem 17 000 pacient\u016f. 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 \u010cLS JEP. <\/p>\n
O NF IMPULS <\/p>\n
Nada\u010dn\u00ed fond IMPULS vznikl roku 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 i 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 provozovatelem celost\u00e1tn\u00edho Registru pacient\u016f s roztrou\u0161enou skler\u00f3zou (ReMuS), jeho financov\u00e1n\u00ed zaji\u0161\u0165uje z vlastn\u00edch zdroj\u016f. Letos slav\u00ed v\u00fdro\u010d\u00ed 15 let od sv\u00e9ho vzniku. V\u00edce informac\u00ed na www.nfimpuls.cz<\/p>\n
Stanislava Beyerov\u00e1
\nTiskov\u00e1 zpr\u00e1va \u2013 Nada\u010dn\u00ed fond IMPULS<\/p>\n","protected":false},"excerpt":{"rendered":"
\u201eM\u00e1te roztrou\u0161enou skler\u00f3zu\u201c \u2013 tento verdikt usly\u0161\u00ed z \u00fast l\u00e9ka\u0159e a\u017e tis\u00edc lid\u00ed ro\u010dn\u011b. S chorobou, kterou nelze \u00fapln\u011b vyl\u00e9\u010dit, bojuje odhadem 17 tis\u00edc \u010cech\u016f, […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":14127,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[11],"tags":[],"class_list":["post-21529","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\/21529","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=21529"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/21529\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/14127"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=21529"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=21529"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=21529"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}