{"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\/de\/attune-webinar-ebook-2\/","title":{"rendered":"ATTUNE-Studie: Webinar und E-Book jetzt verf\u00fcgbar!"},"content":{"rendered":"<p>Wir freuen uns, zwei wertvolle Ressourcen mit euch zu teilen: unsere zweiteilige Webinarreihe \u201eDie ATTUNE-Studie leicht erkl\u00e4rt\u201c sowie ein E-Booklet mit Fragen von Familien aus aller Welt.\nDiese Materialien sollen Familien und Fachkr\u00e4ften detaillierte und leicht verst\u00e4ndliche Informationen zur ersten klinischen Studie zu ION440 liefern, bei der k\u00fcrzlich in den USA mit der Patientenrekrutierung begonnen wurde.<\/p>\n\n\n\n<p>Der erste Teil des Webinars gibt eine Einf\u00fchrung in MDS und erl\u00e4utert den Wirkmechanismus von ION440, w\u00e4hrend er gleichzeitig auf wesentliche Elemente des Designs der klinischen Studie, regulatorische Schritte und Teilnahmekriterien eingeht. <br>Dieser erste Abschnitt vermittelt das grundlegende Wissen, das Familien ben\u00f6tigen, um die ATTUNE-Studie und ihre potenziellen Auswirkungen besser zu verstehen.  <\/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 - Teil 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>Der zweite Teil des Webinars baut auf dieser Grundlage auf und behandelt weitere Fragen, darunter das medizinische Verfahren zur Verabreichung von ION440, die Schein-Kontrollgruppe, die erwarteten Vorteile, Kosten sowie die Kommunikation \u00fcber die n\u00e4chsten Schritte nach ATTUNE. Dieser zweite Teil ist eine essenzielle Ressource f\u00fcr alle, die praktische Informationen \u00fcber die ATTUNE-Studie suchen. Beide Teile des Webinars sind jetzt auf unserem YouTube-Kanal verf\u00fcgbar.   <\/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 - Teil 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>Zur Erg\u00e4nzung der Webinare haben wir au\u00dferdem ein E-Booklet ver\u00f6ffentlicht, das auf \u00fcber 150 Fragen basiert, die von Familien aus 18 verschiedenen L\u00e4ndern gesammelt wurden. Das Booklet beantwortet logistische Fragen zur Studie, medikamentenbezogene Anfragen sowie Teilnahmevoraussetzungen und dient als umfassende Informationsquelle f\u00fcr Familien und Betreuende. Es stellt eine schriftliche Erg\u00e4nzung zur Webinarreihe dar und bietet eine alternative M\u00f6glichkeit, an essenzielle Informationen zu gelangen.   <\/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\">Zum E-book<\/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>Jede Frage im E-Booklet wurde von einem Expertenteam beantwortet, darunter David Covini (DupMECP2), Katie Wester-Neal (MECP2 Duplication Foundation), Dr. Davut Pehlivan (NRI Houston) und Vertreter von Ionis. Durch ihre Expertise wird sichergestellt, dass jede Antwort wissenschaftlich fundiert und pr\u00e4zise ist.  <\/p>\n\n\n\n<p>Wir ermutigen euch, die Webinare anzusehen, das E-Booklet zu lesen und diese Ressourcen mit allen zu teilen, die davon profitieren k\u00f6nnten. <\/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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