{"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-duplication-syndrome","status":"publish","type":"post","link":"https:\/\/dupmecp2.eu\/en\/remeds-international-register-mecp2-duplication-syndrome\/","title":{"rendered":"REMEDS: The international registry for patients with the syndrome"},"content":{"rendered":"<p>We invite all MDS families to be part of&nbsp;<strong>REMEDS, the REgistry and MEDical Survey platform for people affected by MECP2 Duplication Syndrome<\/strong>&nbsp;(MDS).<\/p>\n\n\n\n<p><strong>REMEDS is a secure, multilingual platform where you can:<\/strong><\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>Register&nbsp;<\/strong>your child or a relative affected by MDS<\/li>\n\n\n\n<li><strong>Share valuable information&nbsp;<\/strong>about the syndrome that contributes to research and the improvement of care and treatments<\/li>\n\n\n\n<li><strong>Stay informed<\/strong>&nbsp;about new studies and surveys you can take part in<\/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>Ready to get started?<\/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>All data is fully&nbsp;<strong>protected and anonymized<\/strong>&nbsp;\u2014 and you always remain in control of what you share. REMEDS complies with the highest&nbsp;<strong>GDPR&nbsp;<\/strong>standards and medical data security requirements.<br><br>It was created together with doctors from Johannes Kepler University Hospital in Austria, with advice from specialists such as Dr. Davut Pehlivan and Prof. Hilde Van Esch, and based on the needs expressed by families. The platform was made possible thanks to the support of Ionis and validated by a lawyer specialized in data protection.<br><br><strong>Why join REMEDS?<\/strong><br><strong>Because your story matters.&nbsp;<\/strong>Every participation helps research better understand the syndrome, assess care pathways, work towards better treatments and support services, and understand the geographical distribution of families around the world.<\/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 and MEDical Survey Platform for 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>Registration \u2013 How it works<\/strong><br>To join REMEDS, please follow these steps:<br>1) Create a user account on REMEDS.org \u2014 registration is securely done via your email address.<br>2) Register your child by providing medical information and submitting proof of diagnosis (for example, a genetic test report or a medical certificate).<br>3) After review and approval by the REMEDS medical team, you will be able to manage your child\u2019s data and take part in ongoing surveys.<\/p>\n\n\n\n<p><strong>If you have any questions or need assistance, feel free to email us at office@remeds.org \u2014 we will guide you step-by-step.<\/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\">Sign up here<\/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\/en\/remeds-international-register-mecp2-duplication-syndrome\/\" \/>\n<meta property=\"og:locale\" content=\"en_GB\" \/>\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. 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