{"id":2675,"date":"2023-05-25T18:00:00","date_gmt":"2023-05-25T16:00:00","guid":{"rendered":"https:\/\/www.multiplesclerosis.cz\/?p=2675"},"modified":"2025-08-20T08:52:58","modified_gmt":"2025-08-20T09:52:58","slug":"press-conference-of-the-remus-2023-register","status":"publish","type":"post","link":"https:\/\/multiplesclerosis-app-aca9g6eranbfeyeg.northeurope-01.azurewebsites.net\/en\/2023\/05\/25\/tiskova-konference-registru-remus-2023\/","title":{"rendered":"Treatment of Multiple Sclerosis is Experiencing a Revolution | ReMuS Registry Press Conference 2023"},"content":{"rendered":"\n

K bl\u00ed\u017e\u00edc\u00edmu se sv\u011btov\u00e9mu dni roztrou\u0161en\u00e9 skler\u00f3zy (RS) po\u0159\u00e1dal registr pacient\u016f ReMuS tradi\u010dn\u00ed tiskovou konferenci 25. kv\u011btna 2023. V r\u00e1mci konference byla prezentov\u00e1na nejaktu\u00e1ln\u011bj\u0161\u00ed data o RS a praktick\u00e9 po\u010diny, kter\u00e9 se v r\u00e1mci registru ReMuS poda\u0159ilo b\u011bhem 10 let jeho existence realizovat.<\/p>\n\n\n\n

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\u0158e\u010dn\u00edky tiskov\u00e9 konference byli<\/strong><\/h3>\n\n\n\n
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\"\"<\/figure>

prof. MUDr. Eva Kubala Havrdov\u00e1, Dr.Sc.<\/h3>

V\u0161eobecn\u00e1 fakultn\u00ed nemocnice v Praze<\/p><\/div><\/div>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t

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\"\"<\/figure>

prof. MUDr. Dana Hor\u00e1kov\u00e1, Ph.D.<\/h3>

V\u0161eobecn\u00e1 fakultn\u00ed nemocnice v Praze<\/p><\/div><\/div>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t

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\"\"<\/figure>

Ing. Ji\u0159\u00ed Drahota<\/h3>

Registr ReMuS<\/p><\/div><\/div>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t

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\"\"<\/figure>

MUDr. Pavel Hrad\u00edlek, Ph.D.<\/h3>

Fakultn\u00ed nemocnice Ostrava<\/p><\/div><\/div>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\n<\/div>\n\n\n\n

L\u00e9\u010dba roztrou\u0161en\u00e9 skler\u00f3zy za\u017e\u00edv\u00e1 v \u010cesku revoluci<\/h2>\n\n\n\n

K pacient\u016fm se dost\u00e1vaj\u00ed hned po prvn\u00ed atace vysoce \u00fa\u010dinn\u00e9 l\u00e9ky, na kter\u00e9 by d\u0159\u00edve museli dlouho \u010dekat. Jak jsou tyto l\u00e9ky \u00fa\u010dinn\u00e9 a bezpe\u010dn\u00e9, nyn\u00ed l\u00e9ka\u0159i ost\u0159e sleduj\u00ed prost\u0159ednictv\u00edm registru pacient\u016f s roztrou\u0161enou skler\u00f3zou ReMuS. Ten letos oslav\u00ed 10let\u00e9 v\u00fdro\u010d\u00ed \u2013 nejnov\u011bj\u0161\u00ed data tradi\u010dn\u011b vyd\u00e1v\u00e1 p\u0159i p\u0159\u00edle\u017eitosti Sv\u011btov\u00e9ho dne roztrou\u0161en\u00e9 skler\u00f3zy, kter\u00fd p\u0159ipad\u00e1 na 30. kv\u011btna. <\/strong><\/p>\n\n\n\n

\u201eP\u0159i\u0161la nov\u00e1 l\u00e9\u010diva a dramaticky zlep\u0161ila osudy nemocn\u00fdch. Proto\u017ee jsou efektivn\u00ed, nesou s sebou v\u00edce ne\u017e\u00e1douc\u00edch \u00fa\u010dink\u016f. Roztrou\u0161en\u00e1 skler\u00f3za \u010dasto propuk\u00e1 v mlad\u0161\u00edm v\u011bku, a proto mus\u00edme pe\u010dliv\u011b sledovat, jak se l\u00e9ky chovaj\u00ed v t\u011ble pacient\u016f po 10, 20 letech od nasazen\u00ed \u2013 zda nezp\u016fsobuj\u00ed jin\u00e9 probl\u00e9my. K tomu pot\u0159ebujeme co nejv\u00edce dat, nap\u0159\u00edklad z registru ReMuS. Nov\u00e1 l\u00e9\u010dba je nav\u00edc drah\u00e1, a bez dat jasn\u011b prokazuj\u00edc\u00edch jej\u00ed \u00fa\u010dinek, by se k n\u00ed \u010de\u0161t\u00ed pacienti dost\u00e1vali t\u011b\u017eko,\u201c<\/em> vysv\u011btluje neurolo\u017eka a odborn\u00e1 garantka registru ReMuS doc. MUDr. Dana Hor\u00e1kov\u00e1, Ph.D.<\/p>\n\n\n\n

Rychle nasazen\u00e1 vysoce efektivn\u00ed l\u00e9\u010dba m\u016f\u017ee odd\u00e1lit n\u00e1stup invalidity a\u017e o 10 let \u2013 \u0159\u00edk\u00e1 vedouc\u00ed Centra pro demyeliniza\u010dn\u00ed onemocn\u011bn\u00ed Neurologick\u00e9 kliniky 1. LF UK a VFN v Praze prof. MUDr. Eva Kubala Havrdov\u00e1, CSc. \u201eZcela m\u011bn\u00ed progn\u00f3zu roztrou\u0161en\u00e9 skler\u00f3zy. R\u00e1di bychom do konce leto\u0161n\u00edho roku nasazovali tuto l\u00e9\u010dbu 60\u201370 % nov\u011b diagnostikovan\u00fdch pacient\u016f \u2013 p\u016fvodn\u011b to bylo pouze kolem 20 %. Pro srovn\u00e1n\u00ed, ve \u0160v\u00e9dsku u\u017e\u00edv\u00e1 vysoce efektivn\u00ed l\u00e9ky od za\u010d\u00e1tku nemoci asi 90 % pacient\u016f<\/a>,\u201c<\/em> dopl\u0148uje neurolo\u017eka. V \u010cesku ka\u017ed\u00fd rok p\u0159ibude 700 a\u017e 800 nemocn\u00fdch.<\/p>\n\n\n\n

\"\u00da\u010dastn\u00edci<\/figure>\n\n\n\n

Pro to, aby mohli odborn\u00edci sb\u00edrat a vyhodnocovat data a monitorovat p\u0159\u00edpadn\u00e1 bezpe\u010dnostn\u00ed rizika, mus\u00ed letos po\u017e\u00e1dat v\u0161echny pacienty v registru o nov\u00fd informovan\u00fd souhlas. \u201eAbychom z\u00edskali n\u011bkter\u00e9 \u00fadaje, pot\u0159ebujeme sesb\u00edrat data alespo\u0148 od 50 000 lid\u00ed, a tolik jich v \u010desk\u00e9m registru nem\u00e1me. Proto je d\u016fle\u017eit\u00e9 jej propojit se zahrani\u010d\u00edm a k tomu pot\u0159ebujeme souhlas pacient\u016f. M\u016f\u017eeme pak rychle zas\u00e1hnout a varovat, pokud by se v budoucnu uk\u00e1zalo, \u017ee n\u011bkter\u00e9 l\u00e9ky nejsou pro ur\u010dit\u00e9 pacienty dostate\u010dn\u011b bezpe\u010dn\u00e9,\u201c<\/em> \u0159\u00edk\u00e1 doc. Hor\u00e1kov\u00e1.<\/p>\n\n\n\n

\u010cesk\u00fd registr ReMuS pat\u0159\u00ed k nejv\u011bt\u0161\u00edm v Evrop\u011b. \u201eD\u00edky dat\u016fm v n\u011bm obsa\u017een\u00fdm m\u016f\u017eeme reagovat i na tak nenad\u00e1lou situaci, jakou byla nap\u0159\u00edklad epidemie covidu-19, kdy se \u0159e\u0161ilo, jak nemoc \u010di vakcinace ovliv\u0148uje pacienty s roztrou\u0161enou skler\u00f3zou<\/a>. Revolu\u010dn\u00ed je pak mo\u017enost propojen\u00ed registru s daty zdravotn\u00edch poji\u0161\u0165oven. Bez nich by n\u011bkter\u00e9 v\u00fdzkumy v\u016fbec nebyly provediteln\u00e9. Do budoucna se jedn\u00e1 nap\u0159\u00edklad o zkoum\u00e1n\u00ed toho, jak lze roztrou\u0161enou skler\u00f3zu zachytit je\u0161t\u011b p\u0159ed prvn\u00edm klinick\u00fdm projevem. To by l\u00e9ka\u0159\u016fm umo\u017enilo zas\u00e1hnout opravdu v\u010das,\u201c<\/em> komentuje \u0159editel registru ReMuS Ing. Ji\u0159\u00ed Drahota a dod\u00e1v\u00e1, \u017ee se po\u010det lid\u00ed s roztrou\u0161enou skler\u00f3zou v registru v lo\u0148sk\u00e9m roce vy\u0161plhal na 20 274, z toho 15 459 pacient\u016f je na biologick\u00e9 l\u00e9\u010db\u011b a 4 815 ne.<\/p>\n\n\n\n

\"MUDr.
MUDr. Pavel Hrad\u00edlek na tiskov\u00e9 konferenci registru ReMuS<\/em><\/figcaption><\/figure>\n\n\n\n

S pomoc\u00ed ReMuSu l\u00e9ka\u0159i nap\u0159\u00edklad loni sledovali, jak roztrou\u0161enou skler\u00f3zu ovliv\u0148uje kojen\u00ed<\/a>, a to konkr\u00e9tn\u011b u 1 681 t\u011bhotenstv\u00ed. Pozorovali, jak se nemoc chov\u00e1 u \u017een, kter\u00e9 vysadily l\u00e9\u010dbu a kojily t\u0159i a v\u00edce m\u011bs\u00edc\u016f, ve srovn\u00e1n\u00ed s t\u011bmi, kter\u00e9 nekojily a hned po porodu zah\u00e1jily terapii. Zjistili, \u017ee kojen\u00ed u \u017een s RS nem\u011blo negativn\u00ed vliv na pr\u016fb\u011bh onemocn\u011bn\u00ed a jejich stav byl srovnateln\u00fd s t\u011bmi, kter\u00e9 nekojily v\u016fbec. \u201eTyto v\u00fdsledky, kter\u00e9 samoz\u0159ejm\u011b mus\u00ed potvrdit je\u0161t\u011b odborn\u00e9 studie, jsou pro n\u00e1s velmi d\u016fle\u017eit\u00e9. Maminky s RS, cht\u011bj\u00ed kojit jako v\u0161echny ostatn\u00ed, ale vzhledem k tomu, \u017ee obdob\u00ed po porodu s sebou nese vy\u0161\u0161\u00ed riziko relaps\u016f a pokro\u010den\u00ed nemoci, panuj\u00ed kolem kojen\u00ed obavy. Data z registru v\u0161ak siln\u011b nazna\u010duj\u00ed, \u017ee se \u017eeny s RS nemus\u00ed kojen\u00ed ob\u00e1vat, pokud je jejich nemoc stabilizovan\u00e1. Vzhledem k tomu, \u017ee nov\u011b u\u017e mohou u\u017e\u00edvat n\u011bkter\u00e9 l\u00e9ky na RS i b\u011bhem t\u011bhotenstv\u00ed a kojen\u00ed, bude d\u016fle\u017eit\u00e9 sledovat zdravotn\u00ed stav t\u00e9to skupiny v registru v dal\u0161\u00edch letech. Tato zji\u0161t\u011bn\u00ed by mohla pomoci \u017een\u00e1m s RS, kter\u00e9 pl\u00e1nuj\u00ed t\u011bhotenstv\u00ed nebo ji\u017e t\u011bhotn\u00e9 jsou, usnadnit jejich rozhodov\u00e1n\u00ed,\u201c <\/em>\u0159\u00edk\u00e1 MUDr. Pavel Hrad\u00edlek, Ph.D., z Centra pro diagnostiku a l\u00e9\u010dbu demyeliniza\u010dn\u00edch onemocn\u011bn\u00ed Neurologick\u00e9 kliniky FN Ostrava a LF OU. \u201eSt\u00e1le plat\u00ed, \u017ee t\u011bhotenstv\u00ed a kojen\u00ed je t\u0159eba p\u0159edem pl\u00e1novat a konzultovat s l\u00e9ka\u0159em,\u201c<\/em> dopl\u0148uje l\u00e9ka\u0159. Podle dat z registru ReMuS loni v \u010cesku porodilo 206 pacientek s RS.<\/p>\n\n\n\n

Z registru d\u00e1le vypl\u00fdv\u00e1, \u017ee se ve v\u0161ech 15 centrech pro l\u00e9\u010dbu roztrou\u0161en\u00e9 skler\u00f3zy v roce 2022 l\u00e9\u010dilo 71,19 % \u017een a 28,81 % mu\u017e\u016f. Pr\u016fm\u011brn\u00fd v\u011bk v dob\u011b za\u010d\u00e1tku onemocn\u011bn\u00ed byl 32,63 let. Nejv\u00edce pacient\u016f bylo z Prahy (16,4 %). Naopak nejm\u00e9n\u011b (3 011) z Karlovarsk\u00e9ho kraje. V\u00edce ne\u017e polovina pacient\u016f s nasazenou biologickou l\u00e9\u010dbou pracovala na pln\u00fd \u00favazek (61,47 %) a dal\u0161\u00edch 17,23 % na \u010d\u00e1ste\u010dn\u00fd \u00favazek. Z t\u011bch, co biologickou l\u00e9\u010dbu nem\u011bli, nepracovalo 52,07 % pacient\u016f. Invalidn\u00ed d\u016fchod 3. stupn\u011b pob\u00edralo 9,33 % pacient\u016f na biologick\u00e9 l\u00e9\u010db\u011b a 36,67 % bez n\u00ed.<\/p>\n\n\n\n

Za podporu tiskov\u00e9 konference d\u011bkujeme partner\u016fm<\/h4>\n\n\n\t\t
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Tiskov\u00e1 zpr\u00e1va pro m\u00e9dia<\/h4>\n\n\n\n