{"id":19257,"date":"2025-02-04T11:04:37","date_gmt":"2025-02-04T10:04:37","guid":{"rendered":"http:\/\/blogs.bellvitgehospital.cat\/aulaela\/?p=19257"},"modified":"2025-02-04T11:04:38","modified_gmt":"2025-02-04T10:04:38","slug":"participacio-destacada-de-bellvitge-a-la-i-reunio-nacional-multidisciplinar-dela-a-madrid","status":"publish","type":"post","link":"http:\/\/blogs.bellvitgehospital.cat\/aulaela\/participacio-destacada-de-bellvitge-a-la-i-reunio-nacional-multidisciplinar-dela-a-madrid\/","title":{"rendered":"Participaci\u00f3 destacada de Bellvitge a la I Reuni\u00f3 Nacional Multidisciplinar d&#8217;ELA a Madrid"},"content":{"rendered":"\n<p>M\u00e9s de 150 experts cl\u00ednics i investigadors de tot l\u2019Estat han participat en aquest f\u00f2rum, celebrat a Madrid el passat 31 de gener per avaluar l&#8217;estat actual del maneig del pacient a Espanya, compartir bones pr\u00e0ctiques, harmonitzar cures i protocols de treball i promoure la recollida uniforme de dades cl\u00edniques.<\/p>\n\n\n\n<p>La Unitat Funcional de Malaltia de Motoneurona (UFMM) ha tingut una significativa aportaci\u00f3 en el programa de treball. El neur\u00f2leg Raul Dom\u00ednguez, va presentar les caracter\u00edstiques de les escales MiToS i King, dues de les principals eines per abordar l\u2019estadificaci\u00f3 de l\u2019ELA. De la seva banda, les infermeres de la unitat Laia Pallar\u00e8s i M\u00f2nica Messeguer van compartir el model d\u2019atenci\u00f3 que s\u2019ha desenvolupat a la UFMM, la unitat de refer\u00e8ncia a Catalunya pel volum de pacients que at\u00e9n, uns 300.<\/p>\n\n\n\n<figure class=\"wp-block-image size-full is-resized\"><img loading=\"lazy\" src=\"http:\/\/blogs.bellvitgehospital.cat\/aulaela\/wp-content\/uploads\/sites\/2\/2025\/02\/image00018_8.jpeg\" alt=\"\" class=\"wp-image-19258\" width=\"460\" height=\"307\"\/><\/figure>\n\n\n\n<p>La participaci\u00f3 de l\u2019HUB la va tancar la Dra. M\u00f2nica Povedano, cap de la unitat de malaltia de motoneurona, que va presentar els trets principals i els resultats de l\u2019atenci\u00f3 remota als pacients amb la plataforma LinkELA.<\/p>\n\n\n\n<p>La reuni\u00f3 ha estat impulsada per l\u2019Hospital de Bellvitge, l\u2019Hospital La Fe de Val\u00e8ncia, l\u2019Hospital de La Paz, que va acollir la jornada, i la Fundaci\u00f3n Luz\u00f3n L\u2019objectiu primordial d\u2019aquesta 1a reuni\u00f3 era aplegar totes les unitats i consultes d\u2019ELA de l\u2019Estat per estandaritzar procediments de cura i protocols de treball i explicar el funcionament de la Plataforma del Registre Nacional \u00a0de Pacients d&#8217;ELA, que financia la Fundaci\u00f3n Luz\u00f3n, per tal de recollir dades cl\u00edniques i socioecon\u00f2miques fiables i estandarditzades necess\u00e0ries per poder avan\u00e7ar cap a la Medicina de Precisi\u00f3 i trobar una prova diagn\u00f2stica i un tractament contra aquesta malaltia.<\/p>\n\n\n\n<figure class=\"wp-block-image size-full is-resized\"><img loading=\"lazy\" src=\"http:\/\/blogs.bellvitgehospital.cat\/aulaela\/wp-content\/uploads\/sites\/2\/2025\/02\/WhatsApp-Image-2025-01-31-at-19.53.53.jpeg\" alt=\"\" class=\"wp-image-19259\" width=\"471\" height=\"343\"\/><\/figure>\n\n\n\n<p>La Dra. Povedano, que dirigeix el projecte del registre amb el Dr. Juan Francisco V\u00e1zquez de l\u2019Hospital de La Fe de Val\u00e8ncia, ha destacat la rellev\u00e0ncia de la introducci\u00f3 de dades cl\u00edniques, epidemiol\u00f2giques i mostres gen\u00e8tiques dels pacients en aquest registre \u201cper caracteritzar-los molt millor i en futur compartir coneixement amb registres europeus com el Precision ALS\u201d.<\/p>\n\n\n\n<p>Actualment, no hi ha aquest registre que permeti a la comunitat m\u00e8dica i cient\u00edfica quantificar amb exactitud quants malalts d&#8217;ELA hi ha a Espanya i les seves caracter\u00edstiques.<\/p>\n\n\n\n<figure class=\"wp-block-image size-full is-resized\"><img loading=\"lazy\" src=\"http:\/\/blogs.bellvitgehospital.cat\/aulaela\/wp-content\/uploads\/sites\/2\/2025\/02\/image00001_70.jpeg\" alt=\"\" class=\"wp-image-19260\" width=\"483\" height=\"322\"\/><\/figure>\n<div class=\"sharedaddy sd-sharing-enabled\"><div class=\"robots-nocontent sd-block sd-social sd-social-icon sd-sharing\"><h3 class=\"sd-title\">Comparteix aix\u00f2:<\/h3><div class=\"sd-content\"><ul><li class=\"share-facebook\"><a rel=\"nofollow\" data-shared=\"sharing-facebook-19257\" class=\"share-facebook sd-button share-icon no-text\" href=\"http:\/\/blogs.bellvitgehospital.cat\/aulaela\/participacio-destacada-de-bellvitge-a-la-i-reunio-nacional-multidisciplinar-dela-a-madrid\/?share=facebook\" target=\"_blank\" title=\"Comparteix al Facebook\"><span><\/span><span class=\"sharing-screen-reader-text\">Comparteix al Facebook (Opens in new window)<\/span><\/a><\/li><li class=\"share-twitter\"><a rel=\"nofollow\" data-shared=\"sharing-twitter-19257\" class=\"share-twitter sd-button share-icon no-text\" href=\"http:\/\/blogs.bellvitgehospital.cat\/aulaela\/participacio-destacada-de-bellvitge-a-la-i-reunio-nacional-multidisciplinar-dela-a-madrid\/?share=twitter\" target=\"_blank\" title=\"Feu clic per compartir al Twitter\"><span><\/span><span class=\"sharing-screen-reader-text\">Feu clic per compartir al Twitter (Opens in new window)<\/span><\/a><\/li><li class=\"share-google-plus-1\"><a rel=\"nofollow\" data-shared=\"sharing-google-19257\" class=\"share-google-plus-1 sd-button share-icon no-text\" href=\"http:\/\/blogs.bellvitgehospital.cat\/aulaela\/participacio-destacada-de-bellvitge-a-la-i-reunio-nacional-multidisciplinar-dela-a-madrid\/?share=google-plus-1\" target=\"_blank\" title=\"Feu clic per compartir a Google+\"><span><\/span><span class=\"sharing-screen-reader-text\">Feu clic per compartir a Google+ (Opens in new window)<\/span><\/a><\/li><li class=\"share-email\"><a rel=\"nofollow\" data-shared=\"\" class=\"share-email sd-button share-icon no-text\" href=\"http:\/\/blogs.bellvitgehospital.cat\/aulaela\/participacio-destacada-de-bellvitge-a-la-i-reunio-nacional-multidisciplinar-dela-a-madrid\/?share=email\" target=\"_blank\" title=\"Feu clic per enviar un correu electr\u00f2nic a un amic\"><span><\/span><span class=\"sharing-screen-reader-text\">Feu clic per enviar un correu electr\u00f2nic a un amic (Opens in new window)<\/span><\/a><\/li><li class=\"share-print\"><a rel=\"nofollow\" data-shared=\"\" class=\"share-print sd-button share-icon no-text\" href=\"http:\/\/blogs.bellvitgehospital.cat\/aulaela\/participacio-destacada-de-bellvitge-a-la-i-reunio-nacional-multidisciplinar-dela-a-madrid\/\" target=\"_blank\" title=\"Feu clic per imprimir\"><span><\/span><span class=\"sharing-screen-reader-text\">Feu clic per imprimir (Opens in new window)<\/span><\/a><\/li><li class=\"share-end\"><\/li><\/ul><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"<p>M\u00e9s de 150 experts cl\u00ednics i investigadors de tot l\u2019Estat han participat en aquest f\u00f2rum, celebrat a Madrid el passat 31 de gener per avaluar l&#8217;estat actual del maneig del pacient a Espanya, compartir bones pr\u00e0ctiques, harmonitzar cures i protocols &hellip; <a href=\"http:\/\/blogs.bellvitgehospital.cat\/aulaela\/participacio-destacada-de-bellvitge-a-la-i-reunio-nacional-multidisciplinar-dela-a-madrid\/\">Continua llegint <span class=\"meta-nav\">&rarr;<\/span><\/a><\/p>\n<div class=\"sharedaddy sd-sharing-enabled\"><div class=\"robots-nocontent sd-block sd-social sd-social-icon sd-sharing\"><h3 class=\"sd-title\">Comparteix aix\u00f2:<\/h3><div class=\"sd-content\"><ul><li class=\"share-facebook\"><a rel=\"nofollow\" data-shared=\"sharing-facebook-19257\" class=\"share-facebook sd-button share-icon no-text\" href=\"http:\/\/blogs.bellvitgehospital.cat\/aulaela\/participacio-destacada-de-bellvitge-a-la-i-reunio-nacional-multidisciplinar-dela-a-madrid\/?share=facebook\" target=\"_blank\" title=\"Comparteix al Facebook\"><span><\/span><span class=\"sharing-screen-reader-text\">Comparteix al Facebook (Opens in new window)<\/span><\/a><\/li><li class=\"share-twitter\"><a rel=\"nofollow\" data-shared=\"sharing-twitter-19257\" class=\"share-twitter sd-button share-icon no-text\" href=\"http:\/\/blogs.bellvitgehospital.cat\/aulaela\/participacio-destacada-de-bellvitge-a-la-i-reunio-nacional-multidisciplinar-dela-a-madrid\/?share=twitter\" target=\"_blank\" title=\"Feu clic per compartir al Twitter\"><span><\/span><span class=\"sharing-screen-reader-text\">Feu clic per compartir al Twitter (Opens in new window)<\/span><\/a><\/li><li class=\"share-google-plus-1\"><a rel=\"nofollow\" data-shared=\"sharing-google-19257\" class=\"share-google-plus-1 sd-button share-icon no-text\" href=\"http:\/\/blogs.bellvitgehospital.cat\/aulaela\/participacio-destacada-de-bellvitge-a-la-i-reunio-nacional-multidisciplinar-dela-a-madrid\/?share=google-plus-1\" target=\"_blank\" title=\"Feu clic per compartir a Google+\"><span><\/span><span class=\"sharing-screen-reader-text\">Feu clic per compartir a Google+ (Opens in new window)<\/span><\/a><\/li><li class=\"share-email\"><a rel=\"nofollow\" data-shared=\"\" class=\"share-email sd-button share-icon no-text\" href=\"http:\/\/blogs.bellvitgehospital.cat\/aulaela\/participacio-destacada-de-bellvitge-a-la-i-reunio-nacional-multidisciplinar-dela-a-madrid\/?share=email\" target=\"_blank\" title=\"Feu clic per enviar un correu electr\u00f2nic a un amic\"><span><\/span><span class=\"sharing-screen-reader-text\">Feu clic per enviar un correu electr\u00f2nic a un amic (Opens in new window)<\/span><\/a><\/li><li class=\"share-print\"><a rel=\"nofollow\" data-shared=\"\" class=\"share-print sd-button share-icon no-text\" href=\"http:\/\/blogs.bellvitgehospital.cat\/aulaela\/participacio-destacada-de-bellvitge-a-la-i-reunio-nacional-multidisciplinar-dela-a-madrid\/\" target=\"_blank\" title=\"Feu clic per imprimir\"><span><\/span><span class=\"sharing-screen-reader-text\">Feu clic per imprimir (Opens in new window)<\/span><\/a><\/li><li class=\"share-end\"><\/li><\/ul><\/div><\/div><\/div>","protected":false},"author":10,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":[],"categories":[1],"tags":[868,1588,1589,1587],"_links":{"self":[{"href":"http:\/\/blogs.bellvitgehospital.cat\/aulaela\/wp-json\/wp\/v2\/posts\/19257"}],"collection":[{"href":"http:\/\/blogs.bellvitgehospital.cat\/aulaela\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"http:\/\/blogs.bellvitgehospital.cat\/aulaela\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"http:\/\/blogs.bellvitgehospital.cat\/aulaela\/wp-json\/wp\/v2\/users\/10"}],"replies":[{"embeddable":true,"href":"http:\/\/blogs.bellvitgehospital.cat\/aulaela\/wp-json\/wp\/v2\/comments?post=19257"}],"version-history":[{"count":1,"href":"http:\/\/blogs.bellvitgehospital.cat\/aulaela\/wp-json\/wp\/v2\/posts\/19257\/revisions"}],"predecessor-version":[{"id":19261,"href":"http:\/\/blogs.bellvitgehospital.cat\/aulaela\/wp-json\/wp\/v2\/posts\/19257\/revisions\/19261"}],"wp:attachment":[{"href":"http:\/\/blogs.bellvitgehospital.cat\/aulaela\/wp-json\/wp\/v2\/media?parent=19257"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"http:\/\/blogs.bellvitgehospital.cat\/aulaela\/wp-json\/wp\/v2\/categories?post=19257"},{"taxonomy":"post_tag","embeddable":true,"href":"http:\/\/blogs.bellvitgehospital.cat\/aulaela\/wp-json\/wp\/v2\/tags?post=19257"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}