{"id":1197,"date":"2018-03-14T16:16:49","date_gmt":"2018-03-14T15:16:49","guid":{"rendered":"https:\/\/www.neuromuscularbcn.org\/nou-registre-de-malalties-mitocondrials\/"},"modified":"2025-04-30T07:11:19","modified_gmt":"2025-04-30T05:11:19","slug":"nou-registre-de-malalties-mitocondrials","status":"publish","type":"post","link":"https:\/\/www.neuromuscularbcn.org\/ca\/nou-registre-de-malalties-mitocondrials\/","title":{"rendered":"Nou registre de Malalties Mitocondrials"},"content":{"rendered":"<div class=\"fusion-fullwidth fullwidth-box fusion-builder-row-1 fusion-flex-container 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\" 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-spacing-right-medium:1.92%;--awb-spacing-left-medium:1.92%;--awb-width-small:100%;--awb-spacing-right-small:1.92%;--awb-spacing-left-small:1.92%;\"><div class=\"fusion-column-wrapper fusion-flex-justify-content-flex-start fusion-content-layout-column\"><div class=\"fusion-text fusion-text-1\"><p><img decoding=\"async\" class=\"wp-image-3059 alignleft\" src=\"https:\/\/www.neuromuscularbcn.org\/wp-content\/uploads\/2018\/03\/rem.png\" alt=\"\" width=\"400\" height=\"300\" \/>El registre de Malalties Mitocondrials ja est\u00e0 en funcionament. Aquest nou registre \u00e9s el resultat de la col\u00b7laboraci\u00f3 de l&#8217;Hospital de Sant Joan de D\u00e9u, Hospital 12 d&#8217;Octubre, Hospital de Sant Pau i de l&#8217;Associaci\u00f3 de Malalts de Patologia Mitocondrial (AEPMI). Junts han definit les variables d&#8217;aquest registre perqu\u00e8 inclogui pacients adults i pedi\u00e0trics amb l&#8217;objectiu de caracteritzar cl\u00ednica i gen\u00e8ticament als malalts d&#8217;aquesta patologia. Aquest registre \u00e9s part del projecte: Registres Nacionals de Malalties Neuromusculars NMD-ES (CIBERER), en el que participen 30 hospitals de tot el pa\u00eds. El disseny es va realitzar amb l&#8217;eina Redcap, aplicaci\u00f3 web segura que facilita la captura de dades per a investigaci\u00f3. La introducci\u00f3 de dades es realitzar\u00e0 en primer lloc per un &#8220;data entry&#8221; que es despla\u00e7ar\u00e0 als hospitals participants i posteriorment pels propis 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<p><a href=\"http:\/\/www.ciberer.es\/noticias\/ya-se-pueden-introducir-datos-de-pacientes-en-el-nuevo-registro-nacional-de-enfermedades-mitocondriales\" target=\"_blank\" rel=\"noopener\"><strong>M\u00e9s informaci\u00f3<\/strong><\/a><\/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 consultar si el teu hospital de refer\u00e8ncia ja participa en el projecte (veure llistat d&#8217;hospitals participants). Si no \u00e9s aix\u00ed, 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.[form_contacto mail_destino=&#8221;ssegovia@santpau.cat&#8221; title=&#8221;Contacto Registros (Pacientes)&#8221; id_frm=&#8221;frm_cto_paciente&#8221;]<\/div>\n<div id=\"medico_text\" class=\"txt_despl\">Si encara no participes en el Registre cl\u00ednic, 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.[form_contacto mail_destino=&#8221;ssegovia@santpau.cat&#8221; title=&#8221;Contacto Registros (M\u00e9dicos)&#8221; id_frm=&#8221;frm_cto_medicos&#8221;]<\/div>\n<p>&nbsp;<\/p>\n<\/div><\/div><\/div><\/div><\/div>\n","protected":false},"excerpt":{"rendered":"","protected":false},"author":1,"featured_media":1198,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"inline_featured_image":false,"footnotes":""},"categories":[221,222],"tags":[88,112,68],"class_list":["post-1197","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-noticies-ca","category-registres-ca","tag-associacio-de-pacients","tag-malaltia-mitocondrial","tag-registre"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.2 - 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