{"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":"badanie-attune","status":"publish","type":"post","link":"https:\/\/dupmecp2.eu\/pl\/badanie-attune\/","title":{"rendered":"Demistyfikacja badania ATTUNE"},"content":{"rendered":"<p class=\"wp-block-paragraph\">W maju 2024 r. firma Ionis opublikowa\u0142a protok\u00f3\u0142 badania ATTUNE na stronie clinicaltrials.gov. <\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><\/p>\n\n\n\n<div class=\"wp-block-buttons is-content-justification-center is-layout-flex wp-container-core-buttons-is-layout-3e41869c 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 class=\"wp-block-paragraph\"><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Aby zapewni\u0107 wszystkim lepsze zrozumienie, nasz zesp\u00f3\u0142 wkr\u00f3tce potem uruchomi\u0142 globaln\u0105 ankiet\u0119 w celu zebrania pyta\u0144 od rodzin na temat badania. Otrzymali\u015bmy ponad 150 pyta\u0144 od rodzin z 18 kraj\u00f3w. Na wszystkie pytania odpowiedzieli eksperci MDS, w tym David Covini (DupMECP2), Katie Wester-Neal (MECP2 Duplication Foundation), dr Davut Pehlivan (NRI Houston) i zesp\u00f3\u0142 Ionis, aby zapewni\u0107 dok\u0142adno\u015b\u0107 ka\u017cdej odpowiedzi.   <\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Niniejszy e-book zawiera odpowiedzi na najcz\u0119\u015bciej zadawane pytania i w\u0105tpliwo\u015bci rodzin z ca\u0142ego \u015bwiata. <\/p>\n\n\n\n<p class=\"wp-block-paragraph\"> Pytania i odpowiedzi zosta\u0142y podzielone na trzy g\u0142\u00f3wne sekcje: <\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>Logistyka procesu, <\/strong><strong>Procedury i komunikacja<\/strong> <\/li>\n<\/ul>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>Pytania dotycz\u0105ce lek\u00f3w<\/strong> <\/li>\n<\/ul>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>Kwalifikowalno\u015b\u0107 i wyb\u00f3r uczestnik\u00f3w<\/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-3e41869c 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>Zobacz ebooka<\/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 class=\"wp-block-paragraph\"><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Tre\u015b\u0107 tego e-booka stanowi r\u00f3wnie\u017c podstaw\u0119 naszej dwucz\u0119\u015bciowej serii webinari\u00f3w dost\u0119pnej na YouTube, oferuj\u0105c rodzinom kolejny alternatywny format uzyskiwania niezb\u0119dnych informacji. <\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><\/p>\n\n\n\n<div class=\"wp-block-buttons is-content-justification-center is-layout-flex wp-container-core-buttons-is-layout-3e41869c 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\">Do Webinarium 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\">Do Webinarium 2 <\/a><\/div>\n<\/div>\n\n\n\n<p class=\"wp-block-paragraph\"><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Nie wahaj si\u0119 z nami skontaktowa\u0107, je\u015bli masz jakiekolwiek pytania. <\/p>\n\n\n\n<div class=\"wp-block-buttons is-content-justification-right is-layout-flex wp-container-core-buttons-is-layout-b507c051 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\">Skontaktuj si\u0119 z nami ju\u017c teraz!<\/a><\/div>\n<\/div>\n\n\n\n<p class=\"wp-block-paragraph\"><\/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\/badanie-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\/badanie-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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