{"id":32547,"date":"2025-02-01T15:44:03","date_gmt":"2025-02-01T14:44:03","guid":{"rendered":"https:\/\/dupmecp2.eu\/?p=32547"},"modified":"2025-06-24T11:26:34","modified_gmt":"2025-06-24T09:26:34","slug":"attune-webinar-ebook-2","status":"publish","type":"post","link":"https:\/\/dupmecp2.eu\/es\/attune-webinar-ebook-2\/","title":{"rendered":"El seminario web y el libro electr\u00f3nico sobre el estudio ATTUNE"},"content":{"rendered":"<p>Nos complace compartir con ustedes dos valiosos recursos que ya est\u00e1n en l\u00ednea: nuestra serie de seminarios web en dos partes \"Desmitificando el estudio ATTUNE\" y un libro electr\u00f3nico con preguntas de familias de todo el mundo. El objetivo de estos recursos es proporcionar a las familias y a los profesionales informaci\u00f3n detallada y accesible sobre el primer ensayo cl\u00ednico de ION440, que ha comenzado recientemente a reclutar pacientes en Estados Unidos.<\/p>\n\n\n\n<p>La primera parte del seminario web explica el s\u00edndrome y el mecanismo de acci\u00f3n de ION440, al tiempo que profundiza en los elementos esenciales del dise\u00f1o del ensayo cl\u00ednico, los pasos reglamentarios y los criterios de elegibilidad para participar en el estudio. <br>Esta primera parte proporciona los conocimientos b\u00e1sicos que las familias necesitan para comprender mejor el estudio y su posible impacto.  <\/p>\n\n\n\n<div style=\"height:20px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<div class=\"wp-block-buttons is-content-justification-center is-layout-flex wp-container-core-buttons-is-layout-a89b3969 wp-block-buttons-is-layout-flex\">\n<div class=\"wp-block-button is-style-fill\"><a class=\"wp-block-button__link has-white-color has-text-color has-background has-link-color wp-element-button\" href=\"https:\/\/www.youtube.com\/watch?v=Z1NUj0aURxc&amp;t\" style=\"border-radius:10px;background-color:#f7a13f\">Webinar - Parte 1<\/a><\/div>\n<\/div>\n\n\n\n<div style=\"height:20px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<p>La segunda parte del seminario web parte de esta base y aborda cuestiones adicionales como el procedimiento m\u00e9dico para administrar ION440, el grupo de control simulado (Sham), los beneficios esperados, los costes y la comunicaci\u00f3n sobre los siguientes pasos despu\u00e9s de ATTUNE. La segunda parte es un recurso esencial para cualquiera que busque informaci\u00f3n pr\u00e1ctica sobre el estudio ATTUNE. Las dos partes del seminario web ya est\u00e1n disponibles en nuestro canal de YouTube.   <\/p>\n\n\n\n<div style=\"height:20px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<div class=\"wp-block-buttons is-content-justification-center is-layout-flex wp-container-core-buttons-is-layout-a89b3969 wp-block-buttons-is-layout-flex\">\n<div class=\"wp-block-button is-style-fill\"><a class=\"wp-block-button__link has-white-color has-text-color has-background has-link-color wp-element-button\" href=\"https:\/\/www.youtube.com\/watch?v=NdjIyt_Ygvw\" style=\"border-radius:10px;background-color:#f7a13f\">Webinar - Parte 2<\/a><\/div>\n<\/div>\n\n\n\n<div style=\"height:20px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<p>Para complementar los seminarios web, tambi\u00e9n hemos publicado un folleto electr\u00f3nico, una gu\u00eda creada a partir de m\u00e1s de 150 preguntas recogidas de familias de 18 pa\u00edses diferentes. El folleto abarca cuestiones log\u00edsticas relacionadas con el ensayo, cuestiones de medicaci\u00f3n y criterios de elegibilidad para los participantes, proporcionando un recurso completo para las familias y los cuidadores. Este libro electr\u00f3nico sirve de complemento escrito a la serie de seminarios web, ofreciendo un formato alternativo para acceder a la informaci\u00f3n clave.   <\/p>\n\n\n\n<div style=\"height:20px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<div class=\"wp-block-buttons is-content-justification-center is-layout-flex wp-container-core-buttons-is-layout-a89b3969 wp-block-buttons-is-layout-flex\">\n<div class=\"wp-block-button is-style-fill\"><a class=\"wp-block-button__link has-white-color has-text-color has-background has-link-color wp-element-button\" href=\"https:\/\/form.remeds.org\/250262886969979\" style=\"border-radius:10px;background-color:#f7a13f\" target=\"_blank\" rel=\"noreferrer noopener\">Enlace al libro electr\u00f3nico<\/a><\/div>\n<\/div>\n\n\n\n<div style=\"height:20px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<p>Cada pregunta del e-booklet ha sido respondida por un equipo de expertos, entre los que se encuentran David Covini de DupMECP2, Katie Wester-Neal de la MECP2 Duplication Foundation, el Dr. Davut Pehlivan de NRI Houston y representantes de Ionis. Sus contribuciones garantizan la exactitud de cada respuesta.  <\/p>\n\n\n\n<p>Le animamos a que vea los seminarios web, lea el libro electr\u00f3nico y comparta estos recursos con cualquiera que pueda beneficiarse de ellos. <\/p>\n\n\n\n<div style=\"height:20px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<div class=\"wp-block-buttons is-content-justification-center is-layout-flex wp-container-core-buttons-is-layout-a89b3969 wp-block-buttons-is-layout-flex\"><\/div>\n\n\n\n<p><\/p>","protected":false},"excerpt":{"rendered":"<p>Nous sommes heureux de vous faire part de deux ressources pr\u00e9cieuses qui sont maintenant en ligne : notre s\u00e9rie de webinaires en deux parties \u201c D\u00e9mystifier l&rsquo;\u00e9tude ATTUNE \u201c et [&hellip;]<\/p>","protected":false},"author":1,"featured_media":32766,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[7],"tags":[],"class_list":["post-32547","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-actualite"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v25.8 - 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