{"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":"umfrage-uber-die-potenzielle-teilnahme-an-klinischen-studien","status":"publish","type":"post","link":"https:\/\/dupmecp2.eu\/de\/umfrage-uber-die-potenzielle-teilnahme-an-klinischen-studien\/","title":{"rendered":"MECP2-Duplikationssyndrom Klinische Studie Umfrage"},"content":{"rendered":"<p class=\"wp-block-paragraph\">Die Forschung zur Duplikation des MECP2-Gens einen ganz neuen Meilenstein erreichen: den Beginn von klinischen Studien. Das ist ein echter Hoffnungsschimmer f\u00fcr viele Familien, die jahrelang unerm\u00fcdlich daf\u00fcr gek\u00e4mpft haben, eine bessere Zukunft f\u00fcr ihre Kinder zu erm\u00f6glichen. Doch dieser n\u00e4chste Schritt wird nicht einfach. Der Hauptzweck von klinischen Studien ist, sicherzustellen, dass das entwickelnde Medikament unseren Kindern nicht schadet und seine Wirksamkeit zu beweisen.   <\/p>\n\n<p class=\"wp-block-paragraph\">Auch wenn klinische Studien langwierig und komplex sein k\u00f6nnen, sind sie extrem wichtig. Ohne Patienten gibt es keine Studien \u2013 und ohne Studien gibt es keine Hoffnung auf Ver\u00e4nderungen beim Verlauf des Syndroms. Viele von uns warten gespannt auf den Start der klinischen Studien zu ION440 (Ionis). Eine weitere klinische Studie, HERO mit HG204 (HuidaGene), hat Ende 2024 begonnen, allerdings ausschlie\u00dflich in China. <\/p>\n\n<p class=\"wp-block-paragraph\"><strong>F\u00fcr unser Team bei DupMECP2 ist es von entscheidender Bedeutung zu wissen, ob Familien bereit sind, an diesen Studien teilzunehmen. Je nachdem, wie gro\u00df das Interesse ist, k\u00f6nnen wir dabei helfen, Krankenh\u00e4user auszuw\u00e4hlen, die geografisch passend f\u00fcr die Familien liegen. <br\/>Gemeinsam mit dem Kepler-Krankenhaus (Linz, \u00d6sterreich) haben wir einen Fragebogen entwickelt, um hierzu Informationen zu sammeln. Wir m\u00f6chten euch herzlich einladen, daran teilzunehmen.    <\/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-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-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\">Zur Umfrage<\/a><\/div>\n<\/div>\n\n<div style=\"height:20px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n<p class=\"wp-block-paragraph\">Der Fragebogen ist anonym \u2013 die letzten beiden Fragen sind freiwillig. Es w\u00e4re jedoch eine gro\u00dfe Hilfe, wenn ihr eure E-Mail-Adresse hinterlassen k\u00f6nntet, damit sie an unsere neurologische Expertin im Kepler-Krankenhaus, Dr. Gudrun Gr\u00f6ppel, weitergegeben werden kann. Sie ist Expertin f\u00fcr das MECP2-Syndrom und medizinische Beraterin der DupMECP2-Organisation und plant, in Zukunft noch weitere Frageb\u00f6gen zu klinischen Studien auszusenden.  <\/p>\n\n<p class=\"wp-block-paragraph\">Wir arbeiten aktuell an einem neuen Register f\u00fcr MDS, das uns dabei helfen wird, Informationen schneller und gezielter zu sammeln. Dieses System soll bis Mitte des Jahres bereitstehen. In der Zwischenzeit laden wir euch herzlich dazu ein, an diesem Fragebogen \u00fcber den untenstehenden Link teilzunehmen.   <\/p>\n\n<p class=\"wp-block-paragraph\"><strong>Wir freuen uns \u00fcber Antworten aus allen Teilen der Welt. Teilt den Link gerne mit so vielen betroffenen Familien, wie ihr k\u00f6nnt.  <\/strong><\/p>\n\n<p class=\"wp-block-paragraph\"><em><strong>Bitte bedenkt, dass das Ausf\u00fcllen des Fragebogens in keiner Weise eure Teilnahme an einer klinischen Studie best\u00e4tigt. Die Angaben dienen ausschlie\u00dflich der statistischen Erfassung f\u00fcr Forschungszwecke.  <\/strong><\/em><\/p>\n\n<p class=\"wp-block-paragraph\"><strong>Vielen Dank im Voraus f\u00fcr eure Teilnahme! <\/strong><\/p>\n\n<p class=\"wp-block-paragraph\"><\/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\/de\/umfrage-uber-die-potenzielle-teilnahme-an-klinischen-studien\/\" \/>\n<meta property=\"og:locale\" content=\"de_DE\" \/>\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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