{"id":1293,"date":"2017-07-28T18:48:14","date_gmt":"2017-07-28T16:48:14","guid":{"rendered":"https:\/\/www.neuromuscularbcn.org\/nou-registre-de-miopatia-per-deficit-de-col%c2%b7lagen-vi\/"},"modified":"2025-04-30T07:11:47","modified_gmt":"2025-04-30T05:11:47","slug":"nou-registre-de-miopatia-per-deficit-de-col%c2%b7lagen-vi","status":"publish","type":"post","link":"https:\/\/www.neuromuscularbcn.org\/ca\/nou-registre-de-miopatia-per-deficit-de-col%c2%b7lagen-vi\/","title":{"rendered":"Nou registre de miopatia per d\u00e8ficit de col\u00b7lagen VI"},"content":{"rendered":"<p>Us anunciem el llan\u00e7ament del Registre de Miopatia per d\u00e8ficit de Col\u00b7lagen VI (Registre COL-VI), creat amb l&#8217;objectiu de tenir registrats el major nombre de pacients amb aquesta malaltia per poder realitzar un estudi d&#8217;hist\u00f2ria natural, de 5 anys d&#8217; durada, en pacients pedi\u00e0trics i adults i per poder ajudar en la localitzaci\u00f3 de pacients per a assajos cl\u00ednics.<\/p>\n<p>El disseny d&#8217;aquest registre ha estat consensuat per experts nacionals, tant cl\u00ednics com b\u00e0sics en aquesta patologia, liderats per la Dra. Cecilia Jim\u00e9nez i el Dr. Andr\u00e9s Nascimento de l&#8217;Hospital de Sant Joan de D\u00e9u. Aquest registre forma part del projecte NMD-ES (Registre Espanyol de Malalties Neuromusculars) de CIBERER, que est\u00e0 coordinat des de la Unitat de Malalties Neuromusculars de l&#8217;Hospital de Sant Pau per la Dra. Isabel Illa i que tots ja coneixeu. Actualment el projecte compta amb la participaci\u00f3 de neur\u00f2legs de 28 hospitals<\/p>\n<p>Us convidem a tots a participar en aquest nou projecte i us animem a que introdu\u00efu les dades dels vostres pacients.<\/p>\n<h4 class=\"anclaje_btn_cab\">COM PARTICIPAR AL REGISTRE<\/h4>\n<div id=\"cnt_btn_desp\">\n<div id=\"pacient_despl\" class=\"btn_despl\">Si ets pacient i vols participar<\/div>\n<div id=\"medico_despl\" class=\"btn_despl\">Si ets metge i vols participar<\/div>\n<\/div>\n<div id=\"pacient_text\" class=\"txt_despl\">Les dades d&#8217;aquest registre s\u00f3n introdu\u00efts pel metge neur\u00f2leg del pacient. Si com a pacient afectat vols que les teves dades consten en aquest registre pots demanar al teu metge que es posi en contacte amb nosaltres a l&#8217;adre\u00e7a de correu electr\u00f2nic\u00a0<a href=\"mailto:ssegovia@santpau.cat\" target=\"_blank\" rel=\"noopener noreferrer\">ssegovia@santpau.cat<\/a> o enviant-nos el seg\u00fcent formulari, nosaltres l&#8217;informarem dels passos a seguir per poder participar.<br \/>\n[form_contacto mail_destino=&#8221;ssegovia@santpau.cat&#8221; title=&#8221;Contacte Registre de miopatia per d\u00e8ficit de col\u00b7lagen VI (Pacients)&#8221; id_frm=&#8221;frm_cto_paciente&#8221;]<\/div>\n<div id=\"medico_text\" class=\"txt_despl\">Si encara no participes en el Registre de miopatia per d\u00e8ficit de col\u00b7lagen VI, posa&#8217;t en contacte amb nosaltres a l&#8217;adre\u00e7a de correu\u00a0<a href=\"mailto:ssegovia@santpau.cat\" target=\"_blank\" rel=\"noopener noreferrer\">ssegovia@santpau.cat<\/a> o enviant-nos el seg\u00fcent formulari i t&#8217;informarem de tot el procediment per formar part d&#8217;aquest projecte.<br \/>\n[form_contacto mail_destino=&#8221;ssegovia@santpau.cat&#8221; title=&#8221;Contacte Registre de miopatia per d\u00e8ficit de col\u00b7lagen VI (Metges)&#8221; id_frm=&#8221;frm_cto_medicos&#8221;]<\/div>\n<p>&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Us anunciem el llan\u00e7ament del Registre de Miopatia per d\u00e8ficit de Col\u00b7lagen VI (Registre COL-VI), creat amb l&#8217;objectiu de tenir registrats el major nombre de pacients amb aquesta malaltia per poder realitzar un estudi d&#8217;hist\u00f2ria natural, de 5 anys d&#8217; durada, en pacients pedi\u00e0trics i adults i per poder ajudar en la localitzaci\u00f3 de pacients per a assajos cl\u00ednics. El disseny d&#8217;aquest registre ha estat consensuat per experts nacionals, tant cl\u00ednics com b\u00e0sics en  [&#8230;]<\/p>\n","protected":false},"author":1,"featured_media":1294,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"inline_featured_image":false,"footnotes":""},"categories":[221,222],"tags":[130,131,27,68],"class_list":["post-1293","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-noticies-ca","category-registres-ca","tag-collagen-vi","tag-miopatia","tag-neuromuscular","tag-registre"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.2 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Nou registre de miopatia per d\u00e8ficit de col\u00b7lagen VI - Neuromuscular BCN<\/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.neuromuscularbcn.org\/ca\/nou-registre-de-miopatia-per-deficit-de-col\u00b7lagen-vi\/\" \/>\n<meta property=\"og:locale\" content=\"ca_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Nou registre de miopatia per d\u00e8ficit de col\u00b7lagen VI - Neuromuscular BCN\" \/>\n<meta property=\"og:description\" content=\"Us anunciem el llan\u00e7ament del Registre de Miopatia per d\u00e8ficit de Col\u00b7lagen VI (Registre COL-VI), creat amb l&#8217;objectiu de tenir registrats el major nombre de pacients amb aquesta malaltia per poder realitzar un estudi d&#8217;hist\u00f2ria natural, de 5 anys d&#8217; durada, en pacients pedi\u00e0trics i adults i per poder ajudar en la localitzaci\u00f3 de pacients per a assajos cl\u00ednics. 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