{"id":31337,"date":"2024-12-11T20:14:39","date_gmt":"2024-12-11T19:14:39","guid":{"rendered":"https:\/\/dupmecp2.eu\/?p=31337"},"modified":"2025-01-30T21:18:50","modified_gmt":"2025-01-30T20:18:50","slug":"etude-attune","status":"publish","type":"post","link":"https:\/\/dupmecp2.eu\/pl\/etude-attune\/","title":{"rendered":"Demistyfikacja badania ATTUNE"},"content":{"rendered":"<p>En mai 2024, Ionis a publi\u00e9 le protocole de l&rsquo;\u00e9tude ATTUNE sur clinicaltrials.gov. <\/p>\n\n\n\n<p><\/p>\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\"><a class=\"wp-block-button__link has-white-color has-text-color has-background has-text-align-center wp-element-button\" href=\"https:\/\/clinicaltrials.gov\/study\/NCT06430385?cond=Mecp2%20Duplication%20Syndrome&amp;rank=3\" style=\"border-radius:15px;background-color:#f7a13f\" target=\"_blank\" rel=\"noreferrer noopener\">Zobacz protok\u00f3\u0142 badania<\/a><\/div>\n<\/div>\n\n\n\n<p><\/p>\n\n\n\n<p>Dans le but de fournir une meilleure compr\u00e9hension \u00e0 tous, notre \u00e9quipe a lanc\u00e9 peu de temps apr\u00e8s une enqu\u00eate mondiale pour recueillir les questions des familles sur l&rsquo;\u00e9tude. Nous avons re\u00e7u plus de 150 questions de familles de 18 pays. Les questions ont toutes \u00e9t\u00e9 trait\u00e9es par des experts en MDS, notamment David Covini (DupMECP2), Katie Wester-Neal (MECP2 Duplication Foundation), le Dr Davut Pehlivan (NRI Houston) et l&rsquo;\u00e9quipe de Ionis, afin de garantir l&rsquo;exactitude de chaque r\u00e9ponse.   <\/p>\n\n\n\n<p>Ce e-booklet rassemble les r\u00e9ponses aux questions et pr\u00e9occupations les plus fr\u00e9quentes des familles du monde entier. <\/p>\n\n\n\n<p> Ces questions\/r\u00e9ponses ont \u00e9t\u00e9 class\u00e9es en trois grandes sections : <\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>Logistique de l&rsquo;essai, <\/strong><strong>Proc\u00e9dures et Communication<\/strong> <\/li>\n<\/ul>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>Questions relatives aux m\u00e9dicaments<\/strong> <\/li>\n<\/ul>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>Admissibilit\u00e9 et s\u00e9lection des participants<\/strong> <\/li>\n<\/ul>\n\n\n\n<div style=\"height:26px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<div class=\"wp-block-buttons has-white-background-color has-background 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\" id=\"https:\/\/dupmecp2.eu\/wp-content\/uploads\/2024\/12\/Ebook_Demystifying-the-attune-Study_FINAL.pdf\"><a class=\"wp-block-button__link has-white-color has-text-color has-background wp-element-button\" href=\"https:\/\/form.remeds.org\/250262886969979\" style=\"border-radius:15px;background-color:#f7a13f\" target=\"_blank\" rel=\"noreferrer noopener\"><strong>Voir l&rsquo;ebook<\/strong> <\/a><\/div>\n<\/div>\n\n\n\n<div style=\"height:26px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<p><\/p>\n\n\n\n<p>Le contenu de ce livret \u00e9lectronique constitue \u00e9galement la base de notre s\u00e9rie de webinaires en deux parties disponibles sur YouTube, offrant aux familles un autre format alternatif pour obtenir des informations essentielles. <\/p>\n\n\n\n<p><\/p>\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-outline is-style-outline--1\" id=\"https:\/\/youtu.be\/Z1NUj0aURxc?si=dupM-CKI7-Nx2EPg\"><a class=\"wp-block-button__link has-white-background-color has-text-color has-background has-link-color wp-element-button\" href=\"https:\/\/www.youtube.com\/watch?v=Z1NUj0aURxc\" style=\"border-radius:15px;color:#f7a13f\" target=\"_blank\" rel=\"noreferrer noopener\">Vers le webinaire 1 <\/a><\/div>\n\n\n\n<div class=\"wp-block-button is-style-outline is-style-outline--2\" id=\"https:\/\/youtu.be\/NdjIyt_Ygvw?si=j3DGlXka8slbyhpC\"><a class=\"wp-block-button__link has-white-background-color has-text-color has-background has-link-color wp-element-button\" href=\"https:\/\/www.youtube.com\/watch?v=NdjIyt_Ygvwt\" style=\"border-radius:15px;color:#f7a13f\" target=\"_blank\" rel=\"noreferrer noopener\">Vers le webinaire 2 <\/a><\/div>\n<\/div>\n\n\n\n<p><\/p>\n\n\n\n<p>N&rsquo;h\u00e9sitez pas \u00e0 nous contacter si vous avez encore des questions. <\/p>\n\n\n\n<div class=\"wp-block-buttons is-content-justification-right is-layout-flex wp-container-core-buttons-is-layout-d445cf74 wp-block-buttons-is-layout-flex\">\n<div class=\"wp-block-button\"><a class=\"wp-block-button__link has-white-color has-text-color has-background wp-element-button\" href=\"https:\/\/dupmecp2.eu\/pl\/kontakt-2\/?lang=fr\" style=\"border-radius:15px;background-color:#55266c\">Contactez-nous!<\/a><\/div>\n<\/div>\n\n\n\n<p><\/p>","protected":false},"excerpt":{"rendered":"<p>En mai 2024, Ionis a publi\u00e9 le protocole de l&rsquo;\u00e9tude ATTUNE sur clinicaltrials.gov. Dans le but de fournir une meilleure compr\u00e9hension \u00e0 tous, notre \u00e9quipe a lanc\u00e9 peu de temps [&hellip;]<\/p>","protected":false},"author":1,"featured_media":32463,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[7],"tags":[],"class_list":["post-31337","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 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>D\u00e9mystifier l&#039;\u00e9tude ATTUNE - DupMECP2<\/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:\/\/dupmecp2.eu\/pl\/etude-attune\/?lang=fr\" \/>\n<meta property=\"og:locale\" content=\"pl_PL\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"D\u00e9mystifier l&#039;\u00e9tude ATTUNE - DupMECP2\" \/>\n<meta property=\"og:description\" content=\"En mai 2024, Ionis a publi\u00e9 le protocole de l&rsquo;\u00e9tude ATTUNE sur clinicaltrials.gov. Dans le but de fournir une meilleure compr\u00e9hension \u00e0 tous, notre \u00e9quipe a lanc\u00e9 peu de temps [&hellip;]\" \/>\n<meta property=\"og:url\" content=\"https:\/\/dupmecp2.eu\/pl\/etude-attune\/?lang=fr\" \/>\n<meta property=\"og:site_name\" content=\"DupMECP2\" \/>\n<meta property=\"article:published_time\" content=\"2024-12-11T19:14:39+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2025-01-30T20:18:50+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/dupmecp2.eu\/wp-content\/uploads\/2024\/12\/The-E-Book.png\" \/>\n\t<meta property=\"og:image:width\" content=\"1080\" \/>\n\t<meta property=\"og:image:height\" content=\"1080\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/png\" \/>\n<meta name=\"author\" content=\"Caroline\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Napisane przez\" \/>\n\t<meta name=\"twitter:data1\" content=\"Caroline\" \/>\n\t<meta name=\"twitter:label2\" content=\"Szacowany czas czytania\" \/>\n\t<meta name=\"twitter:data2\" content=\"2 minuty\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\/\/dupmecp2.eu\/etude-attune\/?lang=fr#article\",\"isPartOf\":{\"@id\":\"https:\/\/dupmecp2.eu\/etude-attune\/?lang=fr\"},\"author\":{\"name\":\"Caroline\",\"@id\":\"https:\/\/dupmecp2.eu\/#\/schema\/person\/b41e8cbba153cd974ee340386af279ee\"},\"headline\":\"D\u00e9mystifier l&rsquo;\u00e9tude ATTUNE\",\"datePublished\":\"2024-12-11T19:14:39+00:00\",\"dateModified\":\"2025-01-30T20:18:50+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\/\/dupmecp2.eu\/etude-attune\/?lang=fr\"},\"wordCount\":212,\"publisher\":{\"@id\":\"https:\/\/dupmecp2.eu\/#organization\"},\"image\":{\"@id\":\"https:\/\/dupmecp2.eu\/etude-attune\/?lang=fr#primaryimage\"},\"thumbnailUrl\":\"https:\/\/dupmecp2.eu\/wp-content\/uploads\/2024\/12\/The-E-Book.png\",\"articleSection\":[\"Actualit\u00e9\"],\"inLanguage\":\"pl-PL\"},{\"@type\":\"WebPage\",\"@id\":\"https:\/\/dupmecp2.eu\/etude-attune\/?lang=fr\",\"url\":\"https:\/\/dupmecp2.eu\/etude-attune\/?lang=fr\",\"name\":\"D\u00e9mystifier l'\u00e9tude ATTUNE - 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