{"id":33157,"date":"2025-06-12T07:16:07","date_gmt":"2025-06-12T05:16:07","guid":{"rendered":"https:\/\/dupmecp2.eu\/resultats-de-lenquete-la-communaute-du-syndrome-de-duplication-du-gene-mecp2-sexprime\/"},"modified":"2025-07-23T10:27:51","modified_gmt":"2025-07-23T08:27:51","slug":"wyniki-ankiety-z-2025-r","status":"publish","type":"post","link":"https:\/\/dupmecp2.eu\/pl\/wyniki-ankiety-z-2025-r\/","title":{"rendered":"Wyniki ankiety: spo\u0142eczno\u015b\u0107 zespo\u0142u duplikacji genu MECP2 wypowiada si\u0119 na ten temat"},"content":{"rendered":"

Badania nad zespo\u0142em duplikacji MECP2 osi\u0105gn\u0119\u0142y bezprecedensowy kamie\u0144 milowy: wej\u015bcie w \u015bwiat bada\u0144 klinicznych. Jest to promyk nadziei dla wielu rodzin, kt\u00f3re od lat walcz\u0105 o zapewnienie swoim dzieciom lepszej przysz\u0142o\u015bci. <\/p>\n\n\n\n

Wraz z rozpocz\u0119ciem badania klinicznego ATTUNE (ION440 firmy Ionis) w Stanach Zjednoczonych i badania klinicznego HERO (HG204 firmy HuidaGene) w Chinach, jest to historyczny moment w poszukiwaniu lekarstwa. Te badania fazy 1\/2 maj\u0105 na celu ocen\u0119 bezpiecze\u0144stwa i potencjalnej skuteczno\u015bci tych eksperymentalnych lek\u00f3w - ale to dopiero pocz\u0105tek. <\/p>\n\n\n\n

Aby przewidzie\u0107 kolejne kroki - w szczeg\u00f3lno\u015bci testowanie kolejnych faz na wi\u0119ksz\u0105 skal\u0119 - uruchomili\u015bmy globaln\u0105 ankiet\u0119 w marcu 2024 roku.
Jego celem by\u0142o okre\u015blenie zainteresowania i gotowo\u015bci rodzin na ca\u0142ym \u015bwiecie, aby przyczyni\u0107 si\u0119 do planowania przysz\u0142ych bada\u0144, ich projektowania i wyboru o\u015brodk\u00f3w klinicznych, je\u015bli obecne badania oka\u017c\u0105 si\u0119 obiecuj\u0105ce. W ankiecie zebrano odpowiedzi od 94 rodzin z kilku kontynent\u00f3w. <\/p>\n\n\n\n

Chcieliby\u015bmy serdecznie podzi\u0119kowa\u0107 wszystkim rodzinom, kt\u00f3re po\u015bwi\u0119ci\u0142y sw\u00f3j czas, aby wzi\u0105\u0107 udzia\u0142 w konkursie. <\/strong>Ka\u017cda odpowied\u017a pomaga nam lepiej zrozumie\u0107 potrzeby spo\u0142eczno\u015bci - i lepiej j\u0105 wspiera\u0107. <\/p>\n\n\n\n

Poni\u017cej przedstawiamy podsumowanie wynik\u00f3w ankiety. <\/p>\n\n\n\n

\"\"<\/figure>\n\n\n\n

W ankiecie wzi\u0119\u0142y udzia\u0142 94 rodziny z ca\u0142ego \u015bwiata, co \u015bwiadczy o du\u017cym globalnym zainteresowaniu badaniami klinicznymi. Wi\u0119kszo\u015b\u0107 odpowiedzi pochodzi\u0142a z Europy i Ameryki P\u00f3\u0142nocnej. W sumie 91 % uczestnik\u00f3w by\u0142o rodzicami lub opiekunami ch\u0142opc\u00f3w, a 9 % dziewczynek. Dzieci bior\u0105ce udzia\u0142 w badaniu by\u0142y w wieku od 0 do 34 lat. <\/p>\n\n\n\n

\"\"
Gotowo\u015b\u0107 do wzi\u0119cia udzia\u0142u w badaniu klinicznym <\/strong>Ka\u017cdy uczestnik m\u00f3g\u0142 wybra\u0107 tylko jedn\u0105 odpowied\u017a. Procent na podstawie 94 respondent\u00f3w. <\/figcaption><\/figure>\n\n\n\n

Bez wzgl\u0119du na p\u0142e\u0107, wiek lub po\u0142o\u017cenie geograficzne, wi\u0119kszo\u015b\u0107 (77 %) wyrazi\u0142a du\u017ce zainteresowanie w\u0142\u0105czeniem swojego dziecka do badania klinicznego. 19 % by\u0142o niezdecydowanych, a 4 % nie chcia\u0142o uczestniczy\u0107 w badaniu. <\/p>\n\n\n\n

\"\"
Kluczowe czynniki wp\u0142ywaj\u0105ce na uczestnictwo <\/strong>Ka\u017cdy uczestnik m\u00f3g\u0142 wybra\u0107 kilka czynnik\u00f3w. Rozmiar k\u00f3\u0142ek i warto\u015bci procentowe reprezentuj\u0105 odsetek 94 respondent\u00f3w, kt\u00f3rzy wybrali ka\u017cd\u0105 opcj\u0119. <\/figcaption><\/figure>\n\n\n\n

Aby lepiej zrozumie\u0107, co motywowa\u0142o t\u0119 decyzj\u0119, rodziny poproszono o wskazanie czynnik\u00f3w, kt\u00f3re by\u0142y dla nich najwa\u017cniejsze. Ryzyko zwi\u0105zane z leczeniem lub procedur\u0105 by\u0142o najcz\u0119stsz\u0105 obaw\u0105 (86 uczestnik\u00f3w, 91 %). Na drugim miejscu znalaz\u0142y si\u0119 potencjalne korzy\u015bci z leczenia (77 uczestnik\u00f3w, 82 %). Nast\u0119pnie lokalizacja badania (60 uczestnik\u00f3w, 64 %), wsparcie w zakresie podr\u00f3\u017cy i zakwaterowania (47 uczestnik\u00f3w, 50 %) i wreszcie czas trwania badania (37 uczestnik\u00f3w, 39 %). <\/p>\n\n\n\n

Wnioski<\/strong><\/p>\n\n\n\n

Wyniki tej ankiety dostarczaj\u0105 cennych informacji na temat priorytet\u00f3w i pogl\u0105d\u00f3w rodzin dotkni\u0119tych zespo\u0142em duplikacji genu MECP2.
Pomimo r\u00f3\u017cnic w wieku, p\u0142ci i lokalizacji, zdecydowana wi\u0119kszo\u015b\u0107 rodzin chce wzi\u0105\u0107 udzia\u0142 w badaniach klinicznych. <\/p>\n\n\n\n

Ryzyko i potencjalne korzy\u015bci zwi\u0105zane z testowanymi lekami s\u0105 najwa\u017cniejszymi czynnikami wp\u0142ywaj\u0105cymi na decyzj\u0119 o wzi\u0119ciu udzia\u0142u w badaniu. Aspekty logistyczne, takie jak lokalizacja, podr\u00f3\u017c i czas trwania bada\u0144, pozostaj\u0105 wa\u017cne, ale wydaj\u0105 si\u0119 by\u0107 drugorz\u0119dne. <\/p>\n\n\n\n

Podczas gdy badania ATTUNE i HERO zbieraj\u0105 obecnie dane po pierwszych podaniach u ludzi, jeste\u015bmy przekonani, \u017ce z czasem uzyskamy odpowiedzi na niekt\u00f3re pytania i obawy naszej spo\u0142eczno\u015bci. <\/p>\n\n\n\n

Jednocze\u015bnie musimy zacz\u0105\u0107 przygotowywa\u0107 si\u0119 na to, co nast\u0105pi p\u00f3\u017aniej. Je\u015bli wyniki tych wst\u0119pnych bada\u0144 b\u0119d\u0105 pozytywne, szersze uczestnictwo b\u0119dzie mia\u0142o kluczowe znaczenie dla przysz\u0142ych faz bada\u0144 i zapewnienia globalnego dost\u0119pu do terapii. Dlatego w\u0142a\u015bnie opracowano t\u0119 ankiet\u0119: aby zrozumie\u0107, gdzie s\u0105 rodziny, jakie s\u0105 ich oczekiwania i jak ch\u0119tne s\u0105 do udzia\u0142u. <\/p>\n\n\n\n

Ta ankieta to nie tylko dane, ale odzwierciedlenie zaanga\u017cowanej spo\u0142eczno\u015bci, zjednoczonej w skali globalnej, gotowej do rozwoju bada\u0144.
Dla rodzin, kt\u00f3re jeszcze nie wzi\u0119\u0142y udzia\u0142u, ankieta jest nadal otwarta. Nigdy nie jest za p\u00f3\u017ano, aby zabra\u0107 g\u0142os i pom\u00f3c kszta\u0142towa\u0107 przysz\u0142o\u015b\u0107 bada\u0144 klinicznych. <\/p>\n\n\n\n

\n
We\u017a udzia\u0142 w ankiecie<\/a><\/div>\n<\/div>","protected":false},"excerpt":{"rendered":"

La recherche sur le syndrome de duplication MECP2 a franchit une \u00e9tape sans pr\u00e9c\u00e9dent : l\u2019entr\u00e9e dans le monde des essais cliniques. C\u2019est une lueur d\u2019espoir pour de nombreuses familles […]<\/p>","protected":false},"author":1,"featured_media":33077,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[7,201],"tags":[],"class_list":["post-33157","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-actualite","category-recherche-fr"],"yoast_head":"\nR\u00e9sultats de l\u2019enqu\u00eate : la communaut\u00e9 du syndrome de duplication du g\u00e8ne MECP2 s\u2019exprime - DupMECP2<\/title>\n<meta name=\"description\" content=\"Pour anticiper les prochaines \u00e9tapes, nous avons lanc\u00e9 une enqu\u00eate mondiale en mars 2024. Son objectif : identifier l\u2019int\u00e9r\u00eat et la pr\u00e9paration des familles du monde entier, afin de contribuer \u00e0 la planification des essais futurs, \u00e0 leur conception et au choix des sites cliniques, si les essais actuels s\u2019av\u00e8rent prometteurs.\" \/>\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\/wyniki-ankiety-z-2025-r\/\" \/>\n<meta property=\"og:locale\" content=\"pl_PL\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"R\u00e9sultats de l\u2019enqu\u00eate : la communaut\u00e9 du syndrome de duplication du g\u00e8ne MECP2 s\u2019exprime - DupMECP2\" \/>\n<meta property=\"og:description\" content=\"Pour anticiper les prochaines \u00e9tapes, nous avons lanc\u00e9 une enqu\u00eate mondiale en mars 2024. Son objectif : identifier l\u2019int\u00e9r\u00eat et la pr\u00e9paration des familles du monde entier, afin de contribuer \u00e0 la planification des essais futurs, \u00e0 leur conception et au choix des sites cliniques, si les essais actuels s\u2019av\u00e8rent prometteurs.\" \/>\n<meta property=\"og:url\" content=\"https:\/\/dupmecp2.eu\/pl\/wyniki-ankiety-z-2025-r\/\" \/>\n<meta property=\"og:site_name\" content=\"DupMECP2\" \/>\n<meta property=\"article:published_time\" content=\"2025-06-12T05:16:07+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2025-07-23T08:27:51+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/dupmecp2.eu\/wp-content\/uploads\/2025\/06\/Surveys-RESULTS.jpg\" \/>\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\/jpeg\" \/>\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=\"5 minut\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\/\/dupmecp2.eu\/resultats-de-lenquete-2025\/#article\",\"isPartOf\":{\"@id\":\"https:\/\/dupmecp2.eu\/resultats-de-lenquete-2025\/\"},\"author\":{\"name\":\"Caroline\",\"@id\":\"https:\/\/dupmecp2.eu\/#\/schema\/person\/b41e8cbba153cd974ee340386af279ee\"},\"headline\":\"R\u00e9sultats de l\u2019enqu\u00eate : la communaut\u00e9 du syndrome de duplication du g\u00e8ne MECP2 s\u2019exprime\",\"datePublished\":\"2025-06-12T05:16:07+00:00\",\"dateModified\":\"2025-07-23T08:27:51+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\/\/dupmecp2.eu\/resultats-de-lenquete-2025\/\"},\"wordCount\":764,\"commentCount\":0,\"publisher\":{\"@id\":\"https:\/\/dupmecp2.eu\/#organization\"},\"image\":{\"@id\":\"https:\/\/dupmecp2.eu\/resultats-de-lenquete-2025\/#primaryimage\"},\"thumbnailUrl\":\"https:\/\/dupmecp2.eu\/wp-content\/uploads\/2025\/06\/Surveys-RESULTS.jpg\",\"articleSection\":[\"Actualit\u00e9\",\"Recherche\"],\"inLanguage\":\"pl-PL\",\"potentialAction\":[{\"@type\":\"CommentAction\",\"name\":\"Comment\",\"target\":[\"https:\/\/dupmecp2.eu\/resultats-de-lenquete-2025\/#respond\"]}]},{\"@type\":\"WebPage\",\"@id\":\"https:\/\/dupmecp2.eu\/resultats-de-lenquete-2025\/\",\"url\":\"https:\/\/dupmecp2.eu\/resultats-de-lenquete-2025\/\",\"name\":\"R\u00e9sultats de l\u2019enqu\u00eate : la communaut\u00e9 du syndrome de duplication du g\u00e8ne MECP2 s\u2019exprime - DupMECP2\",\"isPartOf\":{\"@id\":\"https:\/\/dupmecp2.eu\/#website\"},\"primaryImageOfPage\":{\"@id\":\"https:\/\/dupmecp2.eu\/resultats-de-lenquete-2025\/#primaryimage\"},\"image\":{\"@id\":\"https:\/\/dupmecp2.eu\/resultats-de-lenquete-2025\/#primaryimage\"},\"thumbnailUrl\":\"https:\/\/dupmecp2.eu\/wp-content\/uploads\/2025\/06\/Surveys-RESULTS.jpg\",\"datePublished\":\"2025-06-12T05:16:07+00:00\",\"dateModified\":\"2025-07-23T08:27:51+00:00\",\"description\":\"Pour anticiper les prochaines \u00e9tapes, nous avons lanc\u00e9 une enqu\u00eate mondiale en mars 2024. 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