{"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":"ankieta-dotyczaca-potencjalnego-udzialu-w-badaniach-klinicznych","status":"publish","type":"post","link":"https:\/\/dupmecp2.eu\/pl\/ankieta-dotyczaca-potencjalnego-udzialu-w-badaniach-klinicznych\/","title":{"rendered":"Ankieta dotycz\u0105ca potencjalnego udzia\u0142u w badaniach klinicznych"},"content":{"rendered":"<p>Badania nad zespo\u0142em duplikacji genu MECP2 osi\u0105gn\u0119\u0142y bezprecedensowy kamie\u0144 milowy: wesz\u0142y w \u015bwiat bada\u0144 klinicznych. Jest to promyk nadziei dla wielu rodzin, kt\u00f3re przez lata niestrudzenie pracowa\u0142y, aby zapewni\u0107 naszym dzieciom lepsz\u0105 przysz\u0142o\u015b\u0107. Wci\u0105\u017c jednak musimy przej\u015b\u0107 przez ten etap, kt\u00f3ry nie b\u0119dzie nale\u017ca\u0142 do naj\u0142atwiejszych. G\u0142\u00f3wnym celem bada\u0144 klinicznych jest sprawdzenie, czy opracowany lek nie jest szkodliwy dla naszych dzieci, a po drugie, okre\u015blenie jego skuteczno\u015bci.   <\/p>\n\n<p>Badania kliniczne, cho\u0107 d\u0142ugie i z\u0142o\u017cone, s\u0105 niezb\u0119dne.Bez pacjent\u00f3w nie ma bada\u0144, a bez bada\u0144 nie ma nadziei na zmian\u0119 przebiegu zespo\u0142u.  Podczas gdy wszyscy z niecierpliwo\u015bci\u0105 czekamy na rozpocz\u0119cie bada\u0144 klinicznych nad ION440 (Ionis), inne badanie kliniczne, HG204 (HuidaGene), rozpocz\u0119\u0142o si\u0119 pod koniec 2024 r. w Chinach. <\/p>\n\n<p><strong>Bardzo wa\u017cne jest, aby dowiedzie\u0107 si\u0119, czy jakiekolwiek rodziny by\u0142yby ch\u0119tne do wzi\u0119cia udzia\u0142u w tych badaniach. W zale\u017cno\u015bci od zainteresowania, mo\u017cemy pom\u00f3c zidentyfikowa\u0107 szpitale w oparciu o lokalizacj\u0119 geograficzn\u0105 rodzin. <br\/>Zesp\u00f3\u0142 DupMECP2, przy wsparciu Szpitala Keplera (Linz, Austria), stworzy\u0142 kwestionariusz w celu zebrania informacji na ten temat. Gor\u0105co zach\u0119camy do wzi\u0119cia w nim udzia\u0142u.    <\/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\">Do ankiety<\/a><\/div>\n<\/div>\n\n<div style=\"height:20px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n<p>Niniejszy kwestionariusz jest anonimowy, dlatego dwa ostatnie pytania s\u0105 opcjonalne. By\u0142oby jednak bardzo pomocne, gdyby\u015b m\u00f3g\u0142 udost\u0119pni\u0107 adres e-mail neurologowi szpitala Keplera, dr Gudrun Gr\u00f6ppel, specjalistce w zakresie zespo\u0142u i doradcy medycznemu stowarzyszenia DupMECP2, aby mog\u0142a ona udost\u0119pni\u0107 inne kwestionariusze dotycz\u0105ce w szczeg\u00f3lno\u015bci bada\u0144 klinicznych.  <\/p>\n\n<p>Obecnie pracujemy nad nowym rejestrem dla MDS, po\u0142\u0105czonym z modu\u0142em do wysy\u0142ania ankiet. B\u0119dzie on gotowy w po\u0142owie roku. W mi\u0119dzyczasie zapraszamy do wzi\u0119cia udzia\u0142u w tej ankiecie.   <\/p>\n\n<p><strong>Odpowiedzi ze wszystkich kontynent\u00f3w s\u0105 mile widziane. Prosimy o udost\u0119pnienie linku jak najwi\u0119kszej liczbie rodzin.  <\/strong><\/p>\n\n<p><em><strong>Nale\u017cy pami\u0119ta\u0107, \u017ce odpowiedzi udzielone w kwestionariuszu w \u017caden spos\u00f3b nie oznaczaj\u0105 udzia\u0142u w badaniu klinicznym. Jedynym celem kwestionariusza jest zebranie danych statystycznych do cel\u00f3w badawczych.  <\/strong><\/em><\/p>\n\n<p><strong>Z g\u00f3ry dzi\u0119kujemy za udzia\u0142. <\/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\/pl\/ankieta-dotyczaca-potencjalnego-udzialu-w-badaniach-klinicznych\/\" \/>\n<meta property=\"og:locale\" content=\"pl_PL\" \/>\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. C&rsquo;est une lueur d&rsquo;espoir pour [&hellip;]\" \/>\n<meta property=\"og:url\" content=\"https:\/\/dupmecp2.eu\/pl\/ankieta-dotyczaca-potencjalnego-udzialu-w-badaniach-klinicznych\/\" \/>\n<meta property=\"og:site_name\" content=\"DupMECP2\" \/>\n<meta property=\"article:published_time\" content=\"2025-02-18T14:28:37+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2025-06-24T07:53:25+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/dupmecp2.eu\/wp-content\/uploads\/2025\/02\/Survey.png\" \/>\n\t<meta property=\"og:image:width\" content=\"1080\" \/>\n\t<meta property=\"og:image:height\" content=\"1080\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/png\" \/>\n<meta name=\"author\" content=\"Caroline\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Napisane przez\" \/>\n\t<meta name=\"twitter:data1\" content=\"Caroline\" \/>\n\t<meta name=\"twitter:label2\" content=\"Szacowany czas czytania\" \/>\n\t<meta name=\"twitter:data2\" content=\"3 minuty\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\/\/dupmecp2.eu\/sondage-sur-la-participation-potentielle-aux-essais-cliniques\/#article\",\"isPartOf\":{\"@id\":\"https:\/\/dupmecp2.eu\/sondage-sur-la-participation-potentielle-aux-essais-cliniques\/\"},\"author\":{\"name\":\"Caroline\",\"@id\":\"https:\/\/dupmecp2.eu\/#\/schema\/person\/b41e8cbba153cd974ee340386af279ee\"},\"headline\":\"Sondage sur la participation potentielle aux essais cliniques\",\"datePublished\":\"2025-02-18T14:28:37+00:00\",\"dateModified\":\"2025-06-24T07:53:25+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\/\/dupmecp2.eu\/sondage-sur-la-participation-potentielle-aux-essais-cliniques\/\"},\"wordCount\":402,\"publisher\":{\"@id\":\"https:\/\/dupmecp2.eu\/#organization\"},\"image\":{\"@id\":\"https:\/\/dupmecp2.eu\/sondage-sur-la-participation-potentielle-aux-essais-cliniques\/#primaryimage\"},\"thumbnailUrl\":\"https:\/\/dupmecp2.eu\/wp-content\/uploads\/2025\/02\/Survey.png\",\"articleSection\":[\"Actualit\u00e9\"],\"inLanguage\":\"pl-PL\"},{\"@type\":\"WebPage\",\"@id\":\"https:\/\/dupmecp2.eu\/sondage-sur-la-participation-potentielle-aux-essais-cliniques\/\",\"url\":\"https:\/\/dupmecp2.eu\/sondage-sur-la-participation-potentielle-aux-essais-cliniques\/\",\"name\":\"Sondage sur la participation potentielle aux essais cliniques - 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