{"id":2257,"date":"2017-11-01T11:27:26","date_gmt":"2017-11-01T10:27:26","guid":{"rendered":"https:\/\/www.czech-neuro.cz\/?page_id=2257"},"modified":"2022-01-31T12:11:30","modified_gmt":"2022-01-31T11:11:30","slug":"evropske-referencni-site-pro-vzacna-a-komplexni-onemocneni","status":"publish","type":"page","link":"https:\/\/www.czech-neuro.cz\/pro-odborniky\/evropske-referencni-site-pro-vzacna-a-komplexni-onemocneni\/","title":{"rendered":"Evropsk\u00e9 referen\u010dn\u00ed s\u00edt\u011b pro vz\u00e1cn\u00e1 a komplexn\u00ed onemocn\u011bn\u00ed"},"content":{"rendered":"

Evropsk\u00e9 referen\u010dn\u00ed s\u00edt\u011b pro vz\u00e1cn\u00e1 onemocn\u011bn\u00ed (d\u00e1le ERN) byly ustanoveny za\u010d\u00e1tkem roku 2017 na z\u00e1klad\u011b v\u00fdzvy Evropsk\u00e9 komise. Sdru\u017euj\u00ed poskytovatele zdravotn\u00ed p\u00e9\u010de z r\u016fzn\u00fdch zem\u00ed EU, kte\u0159\u00ed poskytuj\u00ed vysoce specializovanou p\u00e9\u010di zejm\u00e9na v oblasti vz\u00e1cn\u00fdch onemocn\u011bn\u00ed.<\/p>\n

Schv\u00e1leno bylo 24 s\u00edt\u00ed, kter\u00e9 se z\u010d\u00e1sti mohou i p\u0159ekr\u00fdvat \u2013 v\u00fd\u010det a charakteristiky jednotliv\u00fdch s\u00edt\u00ed jsou dostupn\u00e9 na\u00a0https:\/\/ec.europa.eu\/health\/ern\/networks_en<\/strong><\/a><\/p>\n

C\u00edlem s\u00edt\u00ed je harmonizovat poskytovanou zdravotn\u00ed p\u00e9\u010di v r\u00e1mci EU, umo\u017enit pacient\u016fm se vz\u00e1cn\u00fdmi chorobami p\u0159\u00edstup k vysoce specializovan\u00e9 p\u00e9\u010di, a to i formou konzultac\u00ed na \u00farovn\u00ed s\u00edt\u00ed \u010di v r\u00e1mci p\u0159eshrani\u010dn\u00ed p\u00e9\u010de. D\u00e1le je c\u00edlem vznik registr\u016f s velk\u00fdm po\u010dtem pacient\u016f, kter\u00e9 umo\u017en\u00ed v\u00fdzkum v oblasti vz\u00e1cn\u00fdch onemocn\u011bn\u00ed a hled\u00e1n\u00ed i p\u0159\u00edpadn\u011b ov\u011b\u0159en\u00ed nov\u00fdch diagnostick\u00fdch nebo l\u00e9\u010debn\u00fdch postup\u016f.\u00a0Za z\u00e1sadn\u00ed z\u00a0hlediska optimalizace p\u00e9\u010de o pacienty i z\u00a0hlediska projektov\u00e1n\u00ed v\u00fdzkumn\u00fdch priorit je pova\u017eov\u00e1no Evropskou komis\u00ed i zapojen\u00ed pacientsk\u00fdch organizac\u00ed.<\/p>\n

Pro neurologii jsou v\u00fdznamn\u00e9 zejm\u00e9na:<\/p>\n

European Reference Network for Rare Neurological Diseases (ERN-RND)
\n<\/strong>http:\/\/www.ern-rnd.eu\/<\/strong><\/a><\/p>\n

ERN-RND si klade za c\u00edl koordinaci diagnostiky a l\u00e9\u010dby vz\u00e1cn\u00fdch neurodegenerativn\u00edch onemocn\u011bn\u00ed v n\u00e1sleduj\u00edc\u00edch okruz\u00edch<\/p>\n

    \n
  1. Leukodystrofie<\/li>\n
  2. Spinocerebel\u00e1rn\u00ed ataxie a heredit\u00e1rn\u00ed spastick\u00e9 parapar\u00e9zy<\/li>\n
  3. Atypick\u00e9 parkinsonsk\u00e9 syndromy<\/li>\n
  4. Chorea<\/li>\n
  5. Dystonie a choroby spojen\u00e9 s\u00a0ukl\u00e1d\u00e1n\u00edm \u017eeleza<\/li>\n
  6. Frontotempor\u00e1ln\u00ed lob\u00e1rn\u00ed degenerace<\/li>\n<\/ol>\n

    V \u010cR byly zat\u00edm po spln\u011bn\u00ed stanoven\u00fdch kriteri\u00ed s\u00edt\u00ed schv\u00e1leny a MZ \u010cR potvrzeny V\u0161eobecn\u00e1 fakultn\u00ed nemocnice v Praze pro okruhy 3, 4 a 5 a\u00a0FN Motol\u00a0pro okruh 2.<\/p>\n

    \u00a0<\/strong>European Reference Network for Rare Neuro<\/strong>muscular\u00a0<\/strong>Diseases (ERN-<\/strong>NM<\/strong>D)
    \n<\/strong>    http:\/\/www.euro-nmd.eu\/<\/strong><\/a><\/p>\n

    V \u010cR byly zat\u00edm po spln\u011bn\u00ed stanoven\u00fdch kriteri\u00ed s\u00edt\u00ed schv\u00e1leny a MZ \u010cR potvrzeny FN Brno a FN Motol.<\/p>\n

    \u00a0<\/strong>European Reference Network for Rare\u00a0<\/strong>and Complex Epilepsies\u00a0<\/strong>(ERN-<\/strong>EpiCARE<\/strong>)
    \n<\/strong>    https:\/\/www.epilepsyallianceeurope.org\/programmes\/epicare\/<\/strong><\/a><\/p>\n

    V \u010cR byly zat\u00edm po spln\u011bn\u00ed stanoven\u00fdch kriteri\u00ed s\u00edt\u00ed schv\u00e1leny a MZ \u010cR potvrzeny FN u Sv. Anny a FN Motol.<\/p>\n

    \u00a0<\/strong>Informace pro neurology obecn\u011b<\/strong><\/p>\n

    Do budoucna by m\u011bla vytvo\u0159en\u00e1 s\u00ed\u0165 umo\u017enit zaregistrov\u00e1n\u00ed pacient\u016f se vz\u00e1cn\u00fdmi chorobami do evropsk\u00e9 s\u00edt\u011b prost\u0159ednictv\u00edm n\u00e1rodn\u00edch center. Ta by m\u011bla m\u00edt dostate\u010dnou kapacitu pro zaji\u0161t\u011bn\u00ed diagnostiky, p\u0159\u00edpadn\u011b l\u00e9\u010dby \u010di za\u0159azen\u00ed do mezin\u00e1rodn\u00edch studi\u00ed. Rovn\u011b\u017e by m\u011bla zaji\u0161\u0165ovat konzultace nejasn\u00fdch \u010di unik\u00e1tn\u00edch p\u0159\u00edpad\u016f na \u00farovni p\u0159\u00edslu\u0161n\u00e9 ERN. Nastaven\u00ed vztah\u016f a sm\u011b\u0159ov\u00e1n\u00ed pacient\u016f nen\u00ed zat\u00edm ve v\u011bt\u0161in\u011b zem\u00ed vy\u0159e\u0161en\u00e9 a bude se teprve v\u00a0n\u00e1sleduj\u00edc\u00edch letech tvo\u0159it a optimalizovat.<\/p>\n

    Informace pro st\u00e1vaj\u00edc\u00ed \u010di \u017e\u00e1daj\u00edc\u00ed centra<\/strong><\/p>\n

    Mo\u017enosti a pravidla p\u0159istoupen\u00ed nov\u00fdch center k\u00a0iniciativ\u011b, p\u0159\u00edpadn\u011b u ERN-RND roz\u0161\u00ed\u0159en\u00ed p\u016fsoben\u00ed o dal\u0161\u00ed skupiny onemocn\u011bn\u00ed pro st\u00e1vaj\u00edc\u00ed \u010dleny \u2013 v\u00a0obou p\u0159\u00edpadech je pot\u0159eba vy\u010dkat\u00a0na v\u00fdzvu ERN, kter\u00e1 by se m\u011bla uskute\u010dnit na konci roku 2017 nebo za\u010d\u00e1tkem roku 2018.\u00a0Proces p\u0159ihla\u0161ov\u00e1n\u00ed\u00a0je\u00a0obdobn\u00fd do v\u0161ech skupin ERN\u00a0a je relativn\u011b administrativn\u011b n\u00e1ro\u010dn\u00fd.\u00a0V\u00a0p\u0159\u00edpad\u011b, \u017ee pracovi\u0161t\u011b (nemocnice) je ji\u017e \u010dlenem n\u011bkter\u00e9ho z\u00a0ERN, tak bude mo\u017eno pou\u017e\u00edt k\u00a0p\u0159ihl\u00e1\u0161ce dokumenty pou\u017eit\u00e9 pro p\u0159edchoz\u00ed p\u0159ihl\u00e1\u0161ku, nicm\u00e9n\u011b lze o\u010dek\u00e1vat, \u017ee v\u0161echny dokumenty budou muset b\u00fdt znovu dolo\u017eeny.<\/p>\n

    Krom\u011b spln\u011bn\u00ed podm\u00ednek konkr\u00e9tn\u00ed s\u00edt\u011b z hlediska po\u010dtu pacient\u016f v jednotliv\u00fdch diagnostick\u00fdch skupin\u00e1ch se vy\u017eaduje i prok\u00e1z\u00e1n\u00ed adekv\u00e1tn\u00edho technick\u00e9ho a person\u00e1ln\u00edho zaji\u0161t\u011bn\u00ed center. Poskytovatel zdravotn\u00ed p\u00e9\u010de (nemocnice) mus\u00ed dolo\u017eit i obecn\u00e9\u00a0dokumenty\u00a0potvrzuj\u00edc\u00ed dodr\u017eov\u00e1n\u00ed obecn\u00fdch princip\u016f p\u0159i zaji\u0161\u0165ov\u00e1n\u00ed zdravotn\u00ed p\u00e9\u010de (\u010d\u00e1ste\u010dn\u011b se p\u0159ekr\u00fdv\u00e1 s po\u017eadavky na obvyklou \u201eakreditaci\u201c). Ned\u00edlnou sou\u010d\u00e1st\u00ed p\u0159ihl\u00e1\u0161ky je schv\u00e1len\u00ed (endorsement) dan\u00e9ho poskytovatele zdravotn\u00ed p\u00e9\u010de ze strany MZ \u010cR.<\/p>\n","protected":false},"excerpt":{"rendered":"

    Evropsk\u00e9 referen\u010dn\u00ed s\u00edt\u011b pro vz\u00e1cn\u00e1 onemocn\u011bn\u00ed (d\u00e1le ERN) byly ustanoveny za\u010d\u00e1tkem roku 2017 na z\u00e1klad\u011b v\u00fdzvy Evropsk\u00e9 komise. Sdru\u017euj\u00ed poskytovatele…<\/p>\n","protected":false},"author":23,"featured_media":0,"parent":100,"menu_order":160,"comment_status":"closed","ping_status":"closed","template":"template-page-without-sidebar-content.php","meta":{"_acf_changed":false,"_searchwp_excluded":"","kia_subtitle":"","footnotes":""},"class_list":["post-2257","page","type-page","status-publish","hentry"],"acf":[],"yoast_head":"\nEvropsk\u00e9 referen\u010dn\u00ed s\u00edt\u011b pro vz\u00e1cn\u00e1 a komplexn\u00ed onemocn\u011bn\u00ed - \u010cesk\u00e1 neurologick\u00e1 spole\u010dnost<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.czech-neuro.cz\/pro-odborniky\/evropske-referencni-site-pro-vzacna-a-komplexni-onemocneni\/\" \/>\n<meta property=\"og:locale\" content=\"cs_CZ\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Evropsk\u00e9 referen\u010dn\u00ed s\u00edt\u011b pro vz\u00e1cn\u00e1 a komplexn\u00ed onemocn\u011bn\u00ed\" \/>\n<meta property=\"og:description\" content=\"Evropsk\u00e9 referen\u010dn\u00ed s\u00edt\u011b pro vz\u00e1cn\u00e1 onemocn\u011bn\u00ed (d\u00e1le ERN) byly ustanoveny za\u010d\u00e1tkem roku 2017 na z\u00e1klad\u011b v\u00fdzvy Evropsk\u00e9 komise. 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