{"id":32549,"date":"2025-02-18T15:28:37","date_gmt":"2025-02-18T14:28:37","guid":{"rendered":"https:\/\/dupmecp2.eu\/?p=32549"},"modified":"2025-06-24T09:53:25","modified_gmt":"2025-06-24T07:53:25","slug":"sondage-sur-la-participation-potentielle-aux-essais-cliniques","status":"publish","type":"post","link":"https:\/\/dupmecp2.eu\/it\/sondage-sur-la-participation-potentielle-aux-essais-cliniques\/","title":{"rendered":"Sondaggio sulla potenziale partecipazione a studi clinici"},"content":{"rendered":"<p>La recherche sur le syndrome de duplication du g\u00e8ne MECP2 a franchi une \u00e9tape sans pr\u00e9c\u00e9dent: elle est entr\u00e9e dans le monde des essais cliniques. C&rsquo;est une lueur d&rsquo;espoir pour de nombreuses familles qui ont travaill\u00e9 sans rel\u00e2che pendant des ann\u00e9es pour offrir un avenir meilleur \u00e0 nos enfants. Cependant, nous devons encore traverser cette phase, qui ne sera pas la plus facile. Les essais cliniques ont pour but premier de v\u00e9rifier que le m\u00e9dicament d\u00e9velopp\u00e9 n&rsquo;est pas nuisible pour nos enfants et, dans un second temps, de d\u00e9terminer son efficacit\u00e9.   <\/p>\n\n<p>Les essais cliniques, bien que longs et complexes, sont indispensables.\u202fSans patients, il n&rsquo;y a pas d&rsquo;essai, et sans essai, il n&rsquo;y a pas d&rsquo;espoir de changer l&rsquo;\u00e9volution du syndrome.  Alors que nous attendons tous avec impatience le d\u00e9but des essais cliniques du ION440 (Ionis), un autre essai clinique, le HG204 (HuidaGene), a d\u00e9but\u00e9 fin 2024, en Chine. <\/p>\n\n<p><strong>Il est crucial de savoir si des familles seraient pr\u00eates \u00e0 participer \u00e0 ces essais. En fonction de l&rsquo;int\u00e9r\u00eat, nous pourrons alors aider \u00e0 identifier des h\u00f4pitaux en fonction de la situation g\u00e9ographique des familles. <br\/>L&rsquo;\u00e9quipe DupMECP2 avec le soutien de l\u00b4Hopital Kepler (Linz, Autriche) a cr\u00e9\u00e9 un questionnaire pour recueillir des informations \u00e0 ce sujet. Nous vous encourageons vivement \u00e0 y participer.    <\/strong><\/p>\n\n<div style=\"height:20px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\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\"><a class=\"wp-block-button__link has-white-color has-text-color has-background has-link-color wp-element-button\" href=\"https:\/\/forms.office.com\/pages\/responsepage.aspx?id=KIq_4agqhkmLKqnzlgHScZGI_f7oRkBOtkgRic3YF7BUNVZIMlBIREI3NFdRQzFYSTZTSEw4QVlXRi4u&amp;route=shorturl\" style=\"border-radius:10px;background-color:#f7a13f\">Vers l&rsquo;enqu\u00eate<\/a><\/div>\n<\/div>\n\n<div style=\"height:20px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n<p>Ce questionnaire est anonyme, c&rsquo;est pourquoi les deux derni\u00e8res questions sont facultatives. Cependant, il serait tr\u00e8s utile que vous partagiez une adresse e-mail qui sera communiqu\u00e9e \u00e0 la neurologue de l\u00b4hoptial Kepler, le Dr Gudrun Gr\u00f6ppel, sp\u00e9cialiste du syndrome et m\u00e9decin conseil de l\u00b4association DupMECP2, afin qu&rsquo;elle puisse partager d\u00b4autres questionnaires concernant notamment les essais cliniques.  <\/p>\n\n<p>Nous travaillons actuellement sur un nouveau registre pour MDS, associ\u00e9 \u00e0 un module permettant l\u00b4envoi de questionnaires. Celui-ci verra le jour d\u00b4ici le milieu de l\u2019ann\u00e9e. En attendant, nous vous invitions \u00e0 participer \u00e0 ce questionnaire.   <\/p>\n\n<p><strong>Les r\u00e9ponses provenant de tous les continents sont les bienvenues. N\u00b4h\u00e9sitez pas \u00e0 partager le lien avec un maximum de familles concern\u00e9es.  <\/strong><\/p>\n\n<p><em><strong>Attention, vos r\u00e9ponses aux questionnaires n\u00b4impliquent en acun cas une participation acquise \u00e0 un esssai clinique. Il s\u00b4agit ici uniquement de collecter des donn\u00e9es statistiques \u00e0 des fins de recherche.  <\/strong><\/em><\/p>\n\n<p><strong>Nous vous remercions par avance de votre participation. <\/strong><\/p>\n\n<p><\/p>","protected":false},"excerpt":{"rendered":"<p>La recherche sur le syndrome de duplication du g\u00e8ne MECP2 a franchi une \u00e9tape sans pr\u00e9c\u00e9dent: elle est entr\u00e9e dans le monde des essais cliniques. C&rsquo;est une lueur d&rsquo;espoir pour [&hellip;]<\/p>","protected":false},"author":1,"featured_media":32754,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[7],"tags":[],"class_list":["post-32549","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>Sondage sur la participation potentielle aux essais cliniques - 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\/it\/sondage-sur-la-participation-potentielle-aux-essais-cliniques\/\" \/>\n<meta property=\"og:locale\" content=\"it_IT\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Sondage sur la participation potentielle aux essais cliniques - DupMECP2\" \/>\n<meta property=\"og:description\" content=\"La recherche sur le syndrome de duplication du g\u00e8ne MECP2 a franchi une \u00e9tape sans pr\u00e9c\u00e9dent: elle est entr\u00e9e dans le monde des essais cliniques. 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