{"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-webinaire-ebook","status":"publish","type":"post","link":"https:\/\/dupmecp2.eu\/it\/attune-webinaire-ebook\/","title":{"rendered":"Il webinar e l'ebook sullo studio ATTUNE"},"content":{"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 un e-book contenant des questions pos\u00e9es par des familles du monde entier. Ces ressources visent \u00e0 fournir aux familles et aux professionnels des informations d\u00e9taill\u00e9es et accessibles sur le premier essai clinique d&rsquo;ION440, qui a r\u00e9cemment commenc\u00e9 \u00e0 recruter des patients aux \u00c9tats-Unis.<\/p>\n\n\n\n<p>La premi\u00e8re partie du webinaire explique le syndrome et le m\u00e9canisme d&rsquo;action d&rsquo;ION440 tout en approfondissant les \u00e9l\u00e9ments essentiels de la conception de l&rsquo;essai clinique, les \u00e9tapes r\u00e9glementaires et les crit\u00e8res d&rsquo;\u00e9ligibilit\u00e9 pour la participation \u00e0 l\u2019\u00e9tude. <br>Cette premi\u00e8re partie fournit les connaissances fondamentales dont les familles ont besoin pour mieux comprendre l&rsquo;\u00e9tude et son l&rsquo;\u00e9tude et son impact potentiel.  <\/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\">Webinaire &#8211; 1\u00e8re partie<\/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>Le deuxi\u00e8me partie du webinaire s&rsquo;appuie sur ces bases et aborde des questions suppl\u00e9mentaires telles que la proc\u00e9dure m\u00e9dicale d&rsquo;administration de ION440, le groupe de contr\u00f4le fictif (Sham), les b\u00e9n\u00e9fices attendus, les co\u00fbts et la communication sur les prochaines \u00e9tapes apr\u00e8s ATTUNE. La deuxi\u00e8me partie est une ressource essentielle pour tous ceux qui recherchent des informations pratiques sur l&rsquo;\u00e9tude ATTUNE. Les deux parties du webinaire sont maintenant disponibles sur notre cha\u00eene 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\">Webinaire &#8211; 2\u00e8me partie<\/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>Pour compl\u00e9ter les webinaires, nous avons \u00e9galement publi\u00e9 un livret \u00e9lectronique, un guide cr\u00e9\u00e9 \u00e0 partir de plus de 150 questions collect\u00e9es aupr\u00e8s de familles de 18 pays diff\u00e9rents. Le livret aborde les questions logistiques relatives \u00e0 l&rsquo;essai, les questions li\u00e9es aux m\u00e9dicaments et les crit\u00e8res d&rsquo;\u00e9ligibilit\u00e9 des participants, offrant ainsi une ressource compl\u00e8te pour les familles et les soignants. Cet e-book sert de compl\u00e9ment \u00e9crit \u00e0 la s\u00e9rie de webinaires, en offrant un format alternatif pour acc\u00e9der aux informations cl\u00e9s.   <\/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\">Lien vers le livre \u00e9lectronique<\/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>Chaque question du livret \u00e9lectronique a \u00e9t\u00e9 trait\u00e9e par une \u00e9quipe d&rsquo;experts, dont David Covini de DupMECP2, Katie Wester-Neal de la MECP2 Duplication Foundation, le Dr Davut Pehlivan du NRI Houston et des repr\u00e9sentants d&rsquo;Ionis. Leurs contributions permettent d&rsquo;assurer l&rsquo;exactitude de chaque r\u00e9ponse.  <\/p>\n\n\n\n<p>Nous vous encourageons \u00e0 regarder les webinaires, \u00e0 lire le e-book et \u00e0 partager ces ressources avec toute personne susceptible d&rsquo;en b\u00e9n\u00e9ficier. <\/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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