{"id":379,"date":"2025-03-27T06:24:35","date_gmt":"2025-03-27T05:24:35","guid":{"rendered":"https:\/\/www.neuromuscularbcn.org\/?page_id=379"},"modified":"2025-04-29T14:35:59","modified_gmt":"2025-04-29T12:35:59","slug":"csur-centros-servicios-y-unidades-de-referencia","status":"publish","type":"page","link":"https:\/\/www.neuromuscularbcn.org\/ca\/centre-acreditat\/csur-centros-servicios-y-unidades-de-referencia\/","title":{"rendered":"CSUR (Centros, Servicios y Unidades de Referencia)"},"content":{"rendered":"<div class=\"fusion-fullwidth fullwidth-box fusion-builder-row-1 fusion-flex-container has-pattern-background has-mask-background nonhundred-percent-fullwidth non-hundred-percent-height-scrolling\" style=\"--awb-border-radius-top-left:0px;--awb-border-radius-top-right:0px;--awb-border-radius-bottom-right:0px;--awb-border-radius-bottom-left:0px;--awb-flex-wrap:wrap;\" ><div class=\"fusion-builder-row fusion-row fusion-flex-align-items-flex-start fusion-flex-content-wrap\" style=\"max-width:1422.72px;margin-left: calc(-4% \/ 2 );margin-right: calc(-4% \/ 2 );\"><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-0 fusion_builder_column_1_1 1_1 fusion-flex-column cnt_PagGen_Content_col\" style=\"--awb-bg-size:cover;--awb-width-large:100%;--awb-margin-top-large:0px;--awb-spacing-right-large:1.92%;--awb-margin-bottom-large:0px;--awb-spacing-left-large:1.92%;--awb-width-medium:100%;--awb-order-medium:0;--awb-spacing-right-medium:1.92%;--awb-spacing-left-medium:1.92%;--awb-width-small:100%;--awb-order-small:0;--awb-spacing-right-small:1.92%;--awb-spacing-left-small:1.92%;\" data-scroll-devices=\"small-visibility,medium-visibility,large-visibility\"><div class=\"fusion-column-wrapper fusion-column-has-shadow fusion-flex-justify-content-flex-start fusion-content-layout-column\"><div class=\"fusion-text fusion-text-1\"><p><img decoding=\"async\" class=\"alignnone wp-image-3123\" src=\"https:\/\/www.neuromuscularbcn.org\/wp-content\/uploads\/2025\/04\/Logotipo_del_Ministerio_de_Sanidad_Servicios_Sociales_e_Igualdad-1024x194-1.png\" alt=\"\" width=\"475\" height=\"90\" srcset=\"https:\/\/www.neuromuscularbcn.org\/wp-content\/uploads\/2025\/04\/Logotipo_del_Ministerio_de_Sanidad_Servicios_Sociales_e_Igualdad-1024x194-1-200x38.png 200w, https:\/\/www.neuromuscularbcn.org\/wp-content\/uploads\/2025\/04\/Logotipo_del_Ministerio_de_Sanidad_Servicios_Sociales_e_Igualdad-1024x194-1-300x57.png 300w, https:\/\/www.neuromuscularbcn.org\/wp-content\/uploads\/2025\/04\/Logotipo_del_Ministerio_de_Sanidad_Servicios_Sociales_e_Igualdad-1024x194-1-400x76.png 400w, https:\/\/www.neuromuscularbcn.org\/wp-content\/uploads\/2025\/04\/Logotipo_del_Ministerio_de_Sanidad_Servicios_Sociales_e_Igualdad-1024x194-1-600x114.png 600w, https:\/\/www.neuromuscularbcn.org\/wp-content\/uploads\/2025\/04\/Logotipo_del_Ministerio_de_Sanidad_Servicios_Sociales_e_Igualdad-1024x194-1-768x146.png 768w, https:\/\/www.neuromuscularbcn.org\/wp-content\/uploads\/2025\/04\/Logotipo_del_Ministerio_de_Sanidad_Servicios_Sociales_e_Igualdad-1024x194-1-800x152.png 800w, https:\/\/www.neuromuscularbcn.org\/wp-content\/uploads\/2025\/04\/Logotipo_del_Ministerio_de_Sanidad_Servicios_Sociales_e_Igualdad-1024x194-1.png 1024w\" sizes=\"(max-width: 475px) 100vw, 475px\" \/><\/p>\n<p>La\u00a0<strong>Unitat de Malalties Neuromusculars<\/strong>\u00a0va rebre l\u2019acreditaci\u00f3 com a\u00a0<strong>CSUR<\/strong>\u00a0al 2015. Per obtenir aquest certificat, va haver de demostrar que reunia una s\u00e8rie de requisits tant assistencials (n\u00famero de pacients visitats i proves realitzades) com de recerca (publicacions cient\u00edfiques i projectes d\u2019investigaci\u00f3) i docent.<\/p>\n<p>La raresa de les malalties neuromusculars (MNM), la complexitat i el cost del seu diagn\u00f2stic i tractament, constitueixen raons suficients per justificar l\u2019exist\u00e8ncia dels CSUR de MNM minorit\u00e0ries on es puguin concentrar l\u2019experi\u00e8ncia i els recursos necessaris per a la seva atenci\u00f3. Els CSUR estarien dirigits a: realitzar el diagn\u00f2stic prec\u00eds de la malaltia quan no s\u2019hagu\u00e9s aconseguit pr\u00e8viament, refor\u00e7ar als centres d\u2019origen en la prevenci\u00f3 prim\u00e0ria i secund\u00e0ria (diagn\u00f2stic preco\u00e7 i \/ o presimptom\u00e0tic) quan fos possible, l\u2019assessoria psicol\u00f2gica i \/ o neuropsicol\u00f2gica experta, el tractament multidisciplinari que desbordi les possibilitats del centre assistencial d\u2019origen, el consell gen\u00e8tic i \/ o reproductiu orientat a la prevenci\u00f3 d\u2019aquests trastorns i el seguiment assistencial quan fos necessari. A m\u00e9s i encara que no sigui l\u2019objectiu principal, aquestes unitats tenen tamb\u00e9 un objectiu docent i serveixen per donar suport a la recerca en malalties minorit\u00e0ries.<\/p>\n<p>Els CSUR del Sistema Nacional de Salut han de:<\/p>\n<ul>\n<li>Donar cobertura a tot el territori nacional i atendre tots els pacients en igualtat de condicions independentment del seu lloc de resid\u00e8ncia.<\/li>\n<li>Proporcionar atenci\u00f3 en equip multidisciplinari: assist\u00e8ncia sanit\u00e0ria, suport per a confirmaci\u00f3 diagn\u00f2stica, definir estrat\u00e8gies terap\u00e8utiques i de seguiment i actuar de consultor per a les unitats cl\u00edniques que atenen habitualment a aquests pacients.<\/li>\n<li>Garantir la continu\u00eftat en l\u2019atenci\u00f3 entre etapes de la vida del pacient (nen-adult) i entre nivells assistencials.<\/li>\n<li>Avaluar els resultats.<\/li>\n<li>Donar formaci\u00f3 a altres professionals<\/li>\n<\/ul>\n<p><strong>Malalties susceptibles de ser ateses als CSUR de MNM minorit\u00e0ries<\/strong>\u00a0que per la seva complexitat diagn\u00f2stica o refractarietat als tractaments convencionals necessitin una orientaci\u00f3 m\u00e9s especialitzada per a un correcte maneig cl\u00ednic:<\/p>\n<ul>\n<li>Les malalties que afecten la motoneurona espinal d\u2019origen hereditari (atr\u00f2fies espinals) i esclerosi lateral amiotr\u00f2fica (ELA).<\/li>\n<li>Les malalties que afecten la placa motora d\u2019origen gen\u00e8tic (s\u00edndromes miast\u00e8nics cong\u00e8nits) o adquirit.<\/li>\n<li>Les neuropaties sensitiu-motores i \/ o auton\u00f2miques heredit\u00e0ries (malaltia de Charcot-Marie-Tooth, neuropaties heredit\u00e0ries sensitives i auton\u00f2miques, neuropaties heredit\u00e0ries motores distals i neuropatia amilo\u00efd\u00f2tica familiar) i adquirides rares d\u2019origen disinmune (poliradiculoneuropat\u00eda inflamat\u00f2ria cr\u00f2nica desmielinitzant, neuropaties motores multifocals , associades a gammapaties monoclonals, etc.) o d\u2019un altre origen.<\/li>\n<li>Les malalties musculars heredit\u00e0ries (distr\u00f2fies musculars i altres miopaties de causa gen\u00e8tica) o adquirides (miopaties inflamat\u00f2ries, t\u00f2xiques o d\u2019un altre origen).<\/li>\n<li>Les ENM multisist\u00e8miques d\u2019origen mitocondrial, amb participaci\u00f3 predominant a nivell neuromuscular.<\/li>\n<\/ul>\n<p><strong>Link d\u2019inter\u00e8s:<br \/>\n<\/strong><a href=\"https:\/\/www.msssi.gob.es\/profesionales\/CentrosDeReferencia\/CentrosCSUR.htm\">https:\/\/www.msssi.gob.es\/profesionales\/CentrosDeReferencia\/CentrosCSUR.htm<\/a><\/p>\n<\/div><\/div><\/div><\/div><\/div>\n","protected":false},"excerpt":{"rendered":"","protected":false},"author":1,"featured_media":0,"parent":371,"menu_order":1,"comment_status":"closed","ping_status":"closed","template":"100-width.php","meta":{"_acf_changed":false,"inline_featured_image":false,"footnotes":""},"class_list":["post-379","page","type-page","status-publish","hentry"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.2 - 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