{"id":33479,"date":"2025-09-04T10:45:04","date_gmt":"2025-09-04T08:45:04","guid":{"rendered":"https:\/\/dupmecp2.eu\/?p=33479"},"modified":"2025-09-10T12:55:39","modified_gmt":"2025-09-10T10:55:39","slug":"remeds-international-register-mecp2-duplikationssyndrom","status":"publish","type":"post","link":"https:\/\/dupmecp2.eu\/de\/remeds-international-register-mecp2-duplikationssyndrom\/","title":{"rendered":"REMEDS: Das internationale Register f\u00fcr Patienten mit dem Syndrom"},"content":{"rendered":"<p>Die Zeit ist gekommen! Wir laden alle MDS-Familien ein, Teil von&nbsp;<strong>REMEDS zu werden, der Register- und Medizinischen Umfrageplattform f\u00fcr Menschen, die vom MECP2-Duplikationssyndrom<\/strong>&nbsp;(MDS) betroffen sind.<\/p>\n\n\n\n<p><strong>REMEDS ist eine sichere, mehrsprachige Plattform, auf der Sie Folgendes erledigen k\u00f6nnen:<\/strong><\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>Registrieren&nbsp;<\/strong>- Ihr Kind oder einen betroffenen Verwandten mit MDS<\/li>\n\n\n\n<li><strong>Wertvolle Informationen \u00fcber das Syndrom teilen&nbsp;<\/strong>, die zur Forschung und Verbesserung von Pflege und Behandlungen beitragen<\/li>\n\n\n\n<li><strong>Informiert bleiben<\/strong>&nbsp;- \u00fcber neue Studien und Umfragen, an denen Sie teilnehmen k\u00f6nnen<\/li>\n<\/ul>\n\n\n\n<div style=\"height:38px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<div class=\"wp-block-buttons is-layout-flex 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-link-color wp-element-button\" href=\"https:\/\/remeds.org\/\" style=\"border-radius:11px;background-color:#f7a13f\"><strong>Bereit loszulegen?<\/strong><\/a><\/div>\n<\/div>\n\n\n\n<div style=\"height:38px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<p>Alle Daten sind vollst\u00e4ndig&nbsp;<strong>gesch\u00fctzt und anonymisiert<\/strong>&nbsp;\u2013 und Sie behalten immer die Kontrolle dar\u00fcber, was Sie teilen. REMEDS entspricht den h\u00f6chsten&nbsp;<strong>DSGVO-Standards&nbsp;<\/strong>und medizinischen Datensicherheitsanforderungen.<br><br>Es wurde zusammen mit \u00c4rzten des Johannes Kepler Universit\u00e4tsklinikums in \u00d6sterreich erstellt, mit Beratung von Spezialisten wie Dr. Davut Pehlivan und Prof. Hilde Van Esch, und basierend auf den von Familien ge\u00e4u\u00dferten Bed\u00fcrfnissen. Die Plattform wurde dank der Unterst\u00fctzung von Ionis erm\u00f6glicht und von einem auf Datenschutz spezialisierten Anwalt validiert.<br><br><strong>Warum REMEDS beitreten?<\/strong><br><strong>Weil Ihre Geschichte z\u00e4hlt.&nbsp;<\/strong>Jede Teilnahme hilft der Forschung, das Syndrom besser zu verstehen, Pflegewege zu bewerten, auf bessere Behandlungen und Unterst\u00fctzungsdienste hinzuarbeiten und die geografische Verteilung von Familien weltweit zu verstehen.<\/p>\n\n\n\n<div style=\"height:38px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<figure class=\"wp-block-embed is-type-video is-provider-youtube wp-block-embed-youtube wp-embed-aspect-16-9 wp-has-aspect-ratio\"><div class=\"wp-block-embed__wrapper\">\n<iframe title=\"REMEDS REgister und MEDical Survey Platform f\u00fcr MECP2 Duplication Syndrome\" width=\"800\" height=\"450\" data-src=\"https:\/\/www.youtube.com\/embed\/8Q4Yizjlm6w?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen src=\"data:image\/svg+xml;base64,PHN2ZyB3aWR0aD0iMSIgaGVpZ2h0PSIxIiB4bWxucz0iaHR0cDovL3d3dy53My5vcmcvMjAwMC9zdmciPjwvc3ZnPg==\" class=\"lazyload\" data-load-mode=\"1\"><\/iframe>\n<\/div><\/figure>\n\n\n\n<p><strong>Registrierung \u2013 So funktioniert's<\/strong><br>Um REMEDS beizutreten, folgen Sie bitte diesen Schritten:<br>1) Erstellen Sie ein Benutzerkonto auf REMEDS.org \u2013 die Registrierung erfolgt sicher \u00fcber Ihre E-Mail-Adresse.<br>2) Registrieren Sie Ihr Kind, indem Sie medizinische Informationen bereitstellen und einen Diagnosenachweis einreichen (zum Beispiel einen Gentestbericht oder ein \u00e4rztliches Attest).<br>3) Nach Pr\u00fcfung und Genehmigung durch das medizinische Team von REMEDS k\u00f6nnen Sie die Daten Ihres Kindes verwalten und an laufenden Umfragen teilnehmen.<\/p>\n\n\n\n<p><strong>Bei Fragen oder wenn Sie Unterst\u00fctzung ben\u00f6tigen, senden Sie gerne eine E-Mail an office@remeds.org \u2013 wir f\u00fchren Sie Schritt f\u00fcr Schritt durch den Prozess.<\/strong><\/p>\n\n\n\n<div style=\"height:38px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<div class=\"wp-block-buttons is-layout-flex 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-link-color wp-element-button\" href=\"https:\/\/remeds.org\/\" style=\"border-radius:11px;background-color:#f7a13f\">Hier anmelden<\/a><\/div>\n<\/div>\n\n\n\n<div style=\"height:38px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<p><\/p>","protected":false},"excerpt":{"rendered":"<p>Le moment est venu ! Nous invitons toutes les familles MDS \u00e0 faire partie de&nbsp;REMEDS, la plateforme de REgistre et d&rsquo;enqu\u00eates M\u00c9Dicales pour les personnes atteintes du syndrome de duplication [&hellip;]<\/p>","protected":false},"author":1,"featured_media":33480,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[7],"tags":[],"class_list":["post-33479","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>REMEDS: Le registre international pour les patients atteints du syndrome - DupMECP2<\/title>\n<meta name=\"description\" content=\"REMEDS est un espace o\u00f9 les familles peuvent partager leurs exp\u00e9riences et contribuer directement \u00e0 faire avancer la recherche et les soins. Chaque inscription est un cadeau pour toute la communaut\u00e9, aidant les scientifiques, les m\u00e9decins et les familles \u00e0 se r\u00e9unir pour construire un avenir meilleur.\" \/>\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\/de\/remeds-international-register-mecp2-duplikationssyndrom\/\" \/>\n<meta property=\"og:locale\" content=\"de_DE\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"REMEDS: Le registre international pour les patients atteints du syndrome - DupMECP2\" \/>\n<meta property=\"og:description\" content=\"REMEDS est un espace o\u00f9 les familles peuvent partager leurs exp\u00e9riences et contribuer directement \u00e0 faire avancer la recherche et les soins. Chaque inscription est un cadeau pour toute la communaut\u00e9, aidant les scientifiques, les m\u00e9decins et les familles \u00e0 se r\u00e9unir pour construire un avenir meilleur.\" \/>\n<meta property=\"og:url\" content=\"https:\/\/dupmecp2.eu\/de\/remeds-international-register-mecp2-duplikationssyndrom\/\" \/>\n<meta property=\"og:site_name\" content=\"DupMECP2\" \/>\n<meta property=\"article:published_time\" content=\"2025-09-04T08:45:04+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2025-09-10T10:55:39+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/dupmecp2.eu\/wp-content\/uploads\/2025\/09\/REMEDS.jpg\" \/>\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\/jpeg\" \/>\n<meta name=\"author\" content=\"Caroline\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Verfasst von\" \/>\n\t<meta name=\"twitter:data1\" content=\"Caroline\" \/>\n\t<meta name=\"twitter:label2\" content=\"Gesch\u00e4tzte Lesezeit\" \/>\n\t<meta name=\"twitter:data2\" content=\"2\u00a0Minuten\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\/\/dupmecp2.eu\/remeds-registre-international-mecp2-duplication-syndrome\/#article\",\"isPartOf\":{\"@id\":\"https:\/\/dupmecp2.eu\/remeds-registre-international-mecp2-duplication-syndrome\/\"},\"author\":{\"name\":\"Caroline\",\"@id\":\"https:\/\/dupmecp2.eu\/#\/schema\/person\/b41e8cbba153cd974ee340386af279ee\"},\"headline\":\"REMEDS: Le registre international pour les patients atteints du syndrome\",\"datePublished\":\"2025-09-04T08:45:04+00:00\",\"dateModified\":\"2025-09-10T10:55:39+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\/\/dupmecp2.eu\/remeds-registre-international-mecp2-duplication-syndrome\/\"},\"wordCount\":403,\"publisher\":{\"@id\":\"https:\/\/dupmecp2.eu\/#organization\"},\"image\":{\"@id\":\"https:\/\/dupmecp2.eu\/remeds-registre-international-mecp2-duplication-syndrome\/#primaryimage\"},\"thumbnailUrl\":\"https:\/\/dupmecp2.eu\/wp-content\/uploads\/2025\/09\/REMEDS.jpg\",\"articleSection\":[\"Actualit\u00e9\"],\"inLanguage\":\"de\"},{\"@type\":\"WebPage\",\"@id\":\"https:\/\/dupmecp2.eu\/remeds-registre-international-mecp2-duplication-syndrome\/\",\"url\":\"https:\/\/dupmecp2.eu\/remeds-registre-international-mecp2-duplication-syndrome\/\",\"name\":\"REMEDS: Le registre international pour les patients atteints du syndrome - DupMECP2\",\"isPartOf\":{\"@id\":\"https:\/\/dupmecp2.eu\/#website\"},\"primaryImageOfPage\":{\"@id\":\"https:\/\/dupmecp2.eu\/remeds-registre-international-mecp2-duplication-syndrome\/#primaryimage\"},\"image\":{\"@id\":\"https:\/\/dupmecp2.eu\/remeds-registre-international-mecp2-duplication-syndrome\/#primaryimage\"},\"thumbnailUrl\":\"https:\/\/dupmecp2.eu\/wp-content\/uploads\/2025\/09\/REMEDS.jpg\",\"datePublished\":\"2025-09-04T08:45:04+00:00\",\"dateModified\":\"2025-09-10T10:55:39+00:00\",\"description\":\"REMEDS est un espace o\u00f9 les familles peuvent partager leurs exp\u00e9riences et contribuer directement \u00e0 faire avancer la recherche et les soins. 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