{"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":"registro-internazionale-remeds-sindrome-da-duplicazione-mecp2","status":"publish","type":"post","link":"https:\/\/dupmecp2.eu\/it\/registro-internazionale-remeds-sindrome-da-duplicazione-mecp2\/","title":{"rendered":"REMEDS: il registro internazionale dei pazienti REMEDS"},"content":{"rendered":"<p>\u00c8 arrivato il momento! Invitiamo tutte le famiglie di MDS a partecipare a&nbsp;<strong>REMEDS, la PIATTAFORMA DI REGISTRO MEDICO E DI INDAGINE PER LE PERSONE AFFETTE DA SINDROME DI DUPLICAZIONE DEL GENE MECP2<\/strong>&nbsp;(MDS) con sede in Europa.<\/p>\n\n\n\n<p><strong>REMEDS \u00e8 una piattaforma sicura e multilingue dove \u00e8 possibile :<\/strong><\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>Registro&nbsp;<\/strong>vostro figlio o un parente con MDS<\/li>\n\n\n\n<li><strong>Condividere le informazioni&nbsp;<\/strong>informazioni preziose sulla sindrome che contribuiscono alla ricerca e al miglioramento dell'assistenza e del trattamento<\/li>\n\n\n\n<li><strong>Mantenersi aggiornati<\/strong>&nbsp;su nuovi studi e sondaggi a cui \u00e8 possibile partecipare<\/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>Siete pronti per iniziare?<\/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>Tutti i dati sono interamente&nbsp;<strong>protetto e anonimo<\/strong>&nbsp;- e l'utente mantiene il controllo su ci\u00f2 che condivide in ogni momento. REMEDS soddisfa gli standard pi\u00f9 elevati della&nbsp;<strong>RGPD&nbsp;<\/strong>e la sicurezza dei dati medici.<br><br>\u00c8 stata creata con l'aiuto dei medici dell'ospedale universitario Johannes Kepler in Austria, con la consulenza di specialisti come il dottor Davut Pehlivan e la professoressa Hilde Van Esch e in risposta alle esigenze espresse dalle famiglie. La piattaforma \u00e8 stata resa possibile grazie al supporto di Ionis e convalidata da un avvocato esperto in protezione dei dati.<br><br><strong>Perch\u00e9 aderire a REMEDS?<\/strong><br><strong>Perch\u00e9 la vostra storia \u00e8 importante.&nbsp;<\/strong>Ogni contributo aiuta la ricerca a comprendere meglio la sindrome, a valutare i percorsi di cura, a lavorare per migliorare i trattamenti e i servizi di supporto e a capire la distribuzione geografica delle famiglie nel mondo.<\/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 e piattaforma di indagine medica per la sindrome da duplicazione MECP2\" 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>Registrazione - Come funziona<\/strong><br>Per aderire a REMEDS, seguire i passaggi indicati di seguito:<br>1) Creare un account utente su REMEDS.org - la registrazione \u00e8 sicura tramite il vostro indirizzo e-mail.<br>2) Registrate il vostro bambino fornendo le informazioni mediche e la prova della diagnosi (ad esempio, il referto di un test genetico o un certificato medico).<br>3) Dopo la revisione e l'approvazione da parte dell'\u00e9quipe medica di REMEDS, potrete gestire i dati di vostro figlio e partecipare ai sondaggi in corso.<\/p>\n\n\n\n<p><strong>Se avete domande o bisogno di aiuto, non esitate a contattarci all'indirizzo office@remeds.org: saremo lieti di aiutarvi in ogni momento.<\/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\">Registrati qui<\/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\/it\/registro-internazionale-remeds-sindrome-da-duplicazione-mecp2\/\" \/>\n<meta property=\"og:locale\" content=\"it_IT\" \/>\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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