{"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":"encuesta-sobre-la-posible-participacion-en-ensayos-clinicos","status":"publish","type":"post","link":"https:\/\/dupmecp2.eu\/es\/encuesta-sobre-la-posible-participacion-en-ensayos-clinicos\/","title":{"rendered":"Encuesta sobre la posible participaci\u00f3n en ensayos cl\u00ednicos"},"content":{"rendered":"<p>La investigaci\u00f3n sobre el s\u00edndrome de duplicaci\u00f3n del gen MECP2 ha alcanzado un hito sin precedentes: ha entrado en el mundo de los ensayos cl\u00ednicos. Esto supone un rayo de esperanza para muchas familias que hemos trabajado incansablemente durante a\u00f1os para ofrecer a nuestros hijos un futuro mejor. Sin embargo, todav\u00eda tenemos que superar esta fase, que no ser\u00e1 la m\u00e1s f\u00e1cil. El objetivo principal de los ensayos cl\u00ednicos es comprobar que el medicamento desarrollado no es perjudicial para nuestros hijos y, en segundo lugar, determinar su eficacia.   <\/p>\n\n<p>Los ensayos cl\u00ednicos, aunque largos y complejos, son esenciales.Sin pacientes, no hay ensayos, y sin ensayos, no hay esperanza de cambiar el curso del s\u00edndrome.  Mientras todos esperamos con impaciencia el inicio de los ensayos cl\u00ednicos de ION440 (Ionis), otro ensayo cl\u00ednico, HG204 (HuidaGene), comenz\u00f3 a finales de 2024 en China. <\/p>\n\n<p><strong>Es crucial averiguar si alguna familia estar\u00eda dispuesta a participar en estos ensayos. En funci\u00f3n del inter\u00e9s, podemos ayudar a identificar hospitales en funci\u00f3n de la ubicaci\u00f3n geogr\u00e1fica de las familias. <br\/>El equipo DupMECP2, con el apoyo del Hospital Kepler (Linz, Austria), ha creado un cuestionario para recabar informaci\u00f3n sobre este tema. Le animamos encarecidamente a participar.    <\/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\">A la encuesta<\/a><\/div>\n<\/div>\n\n<div style=\"height:20px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n<p>Este cuestionario es an\u00f3nimo, por lo que las dos \u00faltimas preguntas son opcionales. No obstante, ser\u00eda muy \u00fatil que compartiera una direcci\u00f3n de correo electr\u00f3nico con la neur\u00f3loga del Hospital Kepler, la Dra. Gudrun Gr\u00f6ppel, especialista en el s\u00edndrome y asesora m\u00e9dica de la asociaci\u00f3n DupMECP2, para que pueda compartir otros cuestionarios relativos a ensayos cl\u00ednicos en particular.  <\/p>\n\n<p>Actualmente estamos trabajando en un nuevo registro para el MDS, combinado con un m\u00f3dulo para el env\u00edo de cuestionarios. Estar\u00e1 listo a mediados de a\u00f1o. Mientras tanto, le invitamos a participar en este cuestionario.   <\/p>\n\n<p><strong>Las respuestas de todos los continentes son bienvenidas. No dude en compartir el enlace con el mayor n\u00famero posible de familias.  <\/strong><\/p>\n\n<p><em><strong>Tenga en cuenta que sus respuestas a los cuestionarios no implican en modo alguno su participaci\u00f3n en un ensayo cl\u00ednico. La \u00fanica finalidad del cuestionario es recopilar datos estad\u00edsticos con fines de investigaci\u00f3n.  <\/strong><\/em><\/p>\n\n<p><strong>Gracias de antemano por su participaci\u00f3n. <\/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\/es\/encuesta-sobre-la-posible-participacion-en-ensayos-clinicos\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\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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