{"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":"sondaggio-sulla-potenziale-partecipazione-a-studi-clinici","status":"publish","type":"post","link":"https:\/\/dupmecp2.eu\/it\/sondaggio-sulla-potenziale-partecipazione-a-studi-clinici\/","title":{"rendered":"Sondaggio sulla potenziale partecipazione a studi clinici"},"content":{"rendered":"<p class=\"wp-block-paragraph\">La ricerca sulla sindrome da duplicazione del gene MECP2 ha raggiunto un traguardo senza precedenti: \u00e8 entrata nel mondo della sperimentazione clinica. Questo \u00e8 un raggio di speranza per molte famiglie che hanno lavorato instancabilmente per anni per offrire ai nostri figli un futuro migliore. Tuttavia, dobbiamo ancora superare questa fase, che non sar\u00e0 la pi\u00f9 semplice. L'obiettivo principale delle sperimentazioni cliniche \u00e8 verificare che il farmaco sviluppato non sia dannoso per i nostri figli e, in secondo luogo, determinarne l'efficacia.   <\/p>\n\n<p class=\"wp-block-paragraph\">Gli studi clinici, sebbene lunghi e complessi, sono essenziali.Senza pazienti non ci sono studi e senza studi non c'\u00e8 speranza di cambiare il corso della sindrome.  Mentre tutti attendiamo con impazienza l'inizio degli studi clinici per ION440 (Ionis), un altro studio clinico, HG204 (HuidaGene), \u00e8 iniziato alla fine del 2024 in Cina. <\/p>\n\n<p class=\"wp-block-paragraph\"><strong>\u00c8 fondamentale scoprire se le famiglie sono disposte a partecipare a questi studi. A seconda dell'interesse, possiamo aiutare a individuare gli ospedali in base alla posizione geografica delle famiglie. <br\/>Il team DupMECP2, con il supporto dell'Ospedale Kepler (Linz, Austria), ha creato un questionario per raccogliere informazioni su questo argomento. Vi invitiamo a partecipare.    <\/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\">Al sondaggio<\/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\">Il questionario \u00e8 anonimo, per questo le ultime due domande sono facoltative. Tuttavia, sarebbe molto utile se poteste condividere un indirizzo e-mail con la neurologa dell'Ospedale Kepler, la dottoressa Gudrun Gr\u00f6ppel, specialista della sindrome e consulente medico dell'associazione DupMECP2, in modo che possa condividere altri questionari riguardanti in particolare gli studi clinici.  <\/p>\n\n<p class=\"wp-block-paragraph\">Attualmente stiamo lavorando a un nuovo registro per MDS, abbinato a un modulo per l'invio di questionari. Il tutto sar\u00e0 pronto per la met\u00e0 dell'anno. Nel frattempo, vi invitiamo a partecipare a questo questionario.   <\/p>\n\n<p class=\"wp-block-paragraph\"><strong>Le risposte da tutti i continenti sono benvenute. Sentitevi liberi di condividere il link con quante pi\u00f9 famiglie possibile.  <\/strong><\/p>\n\n<p class=\"wp-block-paragraph\"><em><strong>Si prega di notare che le risposte ai questionari non implicano in alcun modo la partecipazione a uno studio clinico. L'unico scopo del questionario \u00e8 quello di raccogliere dati statistici a scopo di ricerca.  <\/strong><\/em><\/p>\n\n<p class=\"wp-block-paragraph\"><strong>Vi ringrazio in anticipo per la vostra partecipazione. <\/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\/it\/sondaggio-sulla-potenziale-partecipazione-a-studi-clinici\/\" \/>\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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