{"id":165292,"date":"2025-12-15T09:00:31","date_gmt":"2025-12-15T14:00:31","guid":{"rendered":"https:\/\/wfh.org\/?p=165292"},"modified":"2025-12-23T12:34:19","modified_gmt":"2025-12-23T17:34:19","slug":"la-fmh-publie-de-nouvelles-lignes-directrices-sur-la-therapie-genique-par-aav","status":"publish","type":"post","link":"https:\/\/wfh.org\/fr\/article\/la-fmh-publie-de-nouvelles-lignes-directrices-sur-la-therapie-genique-par-aav\/","title":{"rendered":"La FMH publie de nouvelles lignes directrices sur la th\u00e9rapie g\u00e9nique par AAV"},"content":{"rendered":"\t\t<div data-elementor-type=\"wp-post\" data-elementor-id=\"165292\" class=\"elementor elementor-165292 elementor-165179\" data-elementor-post-type=\"post\">\n\t\t\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-aa72f7d elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"aa72f7d\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-3c7ea42\" data-id=\"3c7ea42\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-426c65a elementor-widget elementor-widget-text-editor\" data-id=\"426c65a\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p>Les <a href=\"https:\/\/pubmed.ncbi.nlm.nih.gov\/41137692\/\" target=\"_blank\" rel=\"noopener\">Lignes directrices de la FMH pour la prise en charge de l\u2019h\u00e9mophilie\u00a0: la th\u00e9rapie g\u00e9nique par AAV, \u00e9dition 2025<\/a> ont \u00e9t\u00e9 d\u00e9velopp\u00e9es selon le mod\u00e8le des lignes directrices de la FMH, une approche con\u00e7ue pour int\u00e9grer les futures mises \u00e0 jour \u00e0 mesure que de nouvelles donn\u00e9es \u00e9mergent.<\/p>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-589053f elementor-widget elementor-widget-heading\" data-id=\"589053f\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h3 class=\"elementor-heading-title elementor-size-default\">Aper\u00e7u<\/h3>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-c2061c7 elementor-widget elementor-widget-text-editor\" data-id=\"c2061c7\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p>La th\u00e9rapie g\u00e9nique par AAV offre la possibilit\u00e9 d\u2019augmentations durables des niveaux de facteurs de coagulation et celle d\u2019une r\u00e9duction des saignements, mais son utilisation demande une s\u00e9lection rigoureuse des patient\u00b7es, la disponibilit\u00e9 de centres sp\u00e9cialis\u00e9s et une surveillance \u00e0 long terme. Les nouvelles lignes directrices comprennent des recommandations pour les centres de traitement de l\u2019h\u00e9mophilie, les \u00e9quipes de soins int\u00e9gr\u00e9s et les personnes atteintes d\u2019h\u00e9mophilie, en \u00e9voquant l\u2019ensemble du parcours de soins depuis l\u2019\u00e9valuation de l\u2019\u00e9ligibilit\u00e9 jusqu\u2019\u00e0 la perfusion et au suivi post-traitement.<\/p>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-b7f7a87 elementor-widget elementor-widget-heading\" data-id=\"b7f7a87\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h3 class=\"elementor-heading-title elementor-size-default\">Recommandations principales<\/h3>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-35fde56 elementor-widget elementor-widget-text-editor\" data-id=\"35fde56\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p>Voici un r\u00e9sum\u00e9 des principales recommandations issues des lignes directrices.<\/p>\n<p><strong>\u00c9ligibilit\u00e9 et d\u00e9pistage<\/strong><\/p>\n<p>Les lignes directrices d\u00e9crivent les \u00e9valuations n\u00e9cessaires pour d\u00e9terminer si une personne\u00a0 atteinte d\u2019h\u00e9mophilie peut \u00eatre \u00e9ligible \u00e0 une th\u00e9rapie g\u00e9nique par AAV. Cela inclut\u00a0:<\/p>\n<ul>\n<li>le d\u00e9pistage d\u2019anticorps AAV<\/li>\n<li>le test d\u2019inhibiteurs<\/li>\n<li>un bilan h\u00e9patique complet<\/li>\n<\/ul>\n<p><strong>N\u00e9cessit\u00e9 de centres de traitement sp\u00e9cialis\u00e9s<\/strong><\/p>\n<p>La th\u00e9rapie g\u00e9nique par AAV doit \u00eatre administr\u00e9e dans des centres correctement \u00e9quip\u00e9s et exp\u00e9riment\u00e9s. Les lignes directrices soulignent la n\u00e9cessit\u00e9\u00a0:<\/p>\n<ul>\n<li>de validations et d\u2019infrastructures bien d\u00e9finies<\/li>\n<li>d\u2019\u00e9quipes multidisciplinaires bien form\u00e9es<\/li>\n<li>de proc\u00e9dures normalis\u00e9es d\u2019exploitation claires<\/li>\n<\/ul>\n<p><strong>\u00c9ducation des patient\u00b7es et prise de d\u00e9cision partag\u00e9e<\/strong><\/p>\n<p>Les personnes atteintes d\u2019h\u00e9mophilie doivent recevoir des informations claires et adapt\u00e9es \u00e0 leur situation sur\u00a0:<\/p>\n<ul>\n<li>le processus de th\u00e9rapie g\u00e9nique<\/li>\n<li>les b\u00e9n\u00e9fices, risques et incertitudes potentiels<\/li>\n<li>les exigences de surveillance<\/li>\n<li>les recommandations en mati\u00e8re de style de vie<\/li>\n<\/ul>\n<p><strong>S\u00e9curit\u00e9 des perfusions<\/strong><\/p>\n<p>Les lignes directrices soulignent l\u2019importance d\u2019une surveillance bien structur\u00e9e tout au long du processus de perfusion, afin d\u2019identifier et prendre en charge les potentielles r\u00e9actions li\u00e9es \u00e0 la perfusion. Certaines de ces mesures sont\u00a0:<\/p>\n<ul>\n<li>une v\u00e9rification r\u00e9guli\u00e8re des constantes vitales pendant la perfusion<\/li>\n<li>une p\u00e9riode d\u2019observation d\u00e9finie ensuite<\/li>\n<li>la disponibilit\u00e9 de m\u00e9dicaments et d\u2019un soutien adapt\u00e9s<\/li>\n<\/ul>\n<p><strong>Surveillance \u00e0 long terme<\/strong><\/p>\n<p>La th\u00e9rapie g\u00e9nique n\u00e9cessitant un suivi constant, ces lignes directrices recommandent\u00a0:<\/p>\n<ul>\n<li>une surveillance r\u00e9guli\u00e8re de la sant\u00e9 h\u00e9patique<\/li>\n<li>une \u00e9valuation continue du d\u00e9veloppement d\u2019inhibiteurs<\/li>\n<li>le maintien du suivi des saignements<\/li>\n<li>un d\u00e9pistage le cas \u00e9ch\u00e9ant chez les individus pr\u00e9sentant des facteurs de risque h\u00e9patique<\/li>\n<\/ul>\n<p>Remarque\u00a0: les personnes atteintes d\u2019h\u00e9mophilie pourront avoir encore besoin de facteur de coagulation pour certaines activit\u00e9s ou interventions.<\/p>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-79ee455 elementor-widget elementor-widget-heading\" data-id=\"79ee455\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h3 class=\"elementor-heading-title elementor-size-default\">Participation aux registres<\/h3>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-f28d952 elementor-widget elementor-widget-text-editor\" data-id=\"f28d952\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p>Afin de renforcer la compr\u00e9hension globale des r\u00e9sultats \u00e0 long terme, les lignes directrices encouragent les personnes atteintes d\u2019h\u00e9mophilie et recevant une th\u00e9rapie g\u00e9nique par AAV \u00e0 s\u2019inscrire au <a href=\"https:\/\/wfh.org\/fr\/recherche-et-collecte-de-donnees\/registre-de-la-therapie-genique\/\" target=\"_blank\" rel=\"noopener\">Registre mondial de la th\u00e9rapie g\u00e9nique de la FMH<\/a> ou \u00e0 un registre national affili\u00e9.<\/p>\n<p>Pour lire dans leur int\u00e9gralit\u00e9 les \u00ab\u00a0Lignes directrices de la FMH pour la prise en charge de l\u2019h\u00e9mophilie\u00a0: la th\u00e9rapie g\u00e9nique par AAV, \u00e9dition 2025\u00a0\u00bb (en anglais), <a href=\"https:\/\/onlinelibrary.wiley.com\/doi\/10.1111\/hae.70113\" target=\"_blank\" rel=\"noopener\">cliquez ici<\/a>.<\/p>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<\/div>\n\t\t","protected":false},"excerpt":{"rendered":"<p>La F\u00e9d\u00e9ration mondiale de l\u2019h\u00e9mophilie (FMH) vient de publier de nouvelles lignes directrices de pratique clinique fond\u00e9es sur les preuves, au sujet de la th\u00e9rapie par virus ad\u00e9noassoci\u00e9 (AAV) pour les personnes atteintes d\u2019h\u00e9mophilie. Elles viennent ajouter un nouveau domaine aux Lignes directrices de la FMH pour la prise en charge de l\u2019h\u00e9mophilie, qui sont plus g\u00e9n\u00e9ralistes, offrant ainsi \u00e0 la communaut\u00e9 mondiale des troubles de la coagulation des recommandations pratiques et \u00e0 jour sur cette option de traitement qui \u00e9volue tr\u00e8s rapidement.  <\/p>\n","protected":false},"author":13,"featured_media":165182,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"inline_featured_image":false,"footnotes":""},"categories":[114,399,203],"tags":[],"search-category":[85],"class_list":["post-165292","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-education-fr","category-featured-4-fr","category-gene-therapy-fr","search-category-article"],"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v27.2 (Yoast SEO v27.2) - https:\/\/yoast.com\/product\/yoast-seo-premium-wordpress\/ -->\n<title>La FMH publie de nouvelles lignes directrices sur la th\u00e9rapie g\u00e9nique par AAV | FMH - F\u00e9d\u00e9ration mondiale de l\u2019h\u00e9mophilie<\/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:\/\/wfh.org\/fr\/article\/la-fmh-publie-de-nouvelles-lignes-directrices-sur-la-therapie-genique-par-aav\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"La FMH publie de nouvelles lignes directrices sur la th\u00e9rapie g\u00e9nique par AAV\" \/>\n<meta property=\"og:description\" content=\"La F\u00e9d\u00e9ration mondiale de l\u2019h\u00e9mophilie (FMH) vient de publier de nouvelles lignes directrices de pratique clinique fond\u00e9es sur les preuves, au sujet de la th\u00e9rapie par virus ad\u00e9noassoci\u00e9 (AAV) pour les personnes atteintes d\u2019h\u00e9mophilie. Elles viennent ajouter un nouveau domaine aux Lignes directrices de la FMH pour la prise en charge de l\u2019h\u00e9mophilie, qui sont plus g\u00e9n\u00e9ralistes, offrant ainsi \u00e0 la communaut\u00e9 mondiale des troubles de la coagulation des recommandations pratiques et \u00e0 jour sur cette option de traitement qui \u00e9volue tr\u00e8s rapidement.\" \/>\n<meta property=\"og:url\" content=\"https:\/\/wfh.org\/fr\/article\/la-fmh-publie-de-nouvelles-lignes-directrices-sur-la-therapie-genique-par-aav\/\" \/>\n<meta property=\"og:site_name\" content=\"FMH - F\u00e9d\u00e9ration mondiale de l\u2019h\u00e9mophilie\" \/>\n<meta property=\"article:publisher\" content=\"https:\/\/www.facebook.com\/wfhemophilia\/\" \/>\n<meta property=\"article:published_time\" content=\"2025-12-15T14:00:31+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2025-12-23T17:34:19+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/wfh.org\/wp-content\/uploads\/2025\/12\/GT-Recs-summary-article-header-FR.jpg\" \/>\n\t<meta property=\"og:image:width\" content=\"1200\" \/>\n\t<meta property=\"og:image:height\" content=\"627\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/jpeg\" \/>\n<meta name=\"author\" content=\"Mitch Semienchuk\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"\u00c9crit par\" \/>\n\t<meta name=\"twitter:data1\" content=\"Mitch Semienchuk\" \/>\n\t<meta name=\"twitter:label2\" content=\"Dur\u00e9e de lecture estim\u00e9e\" \/>\n\t<meta name=\"twitter:data2\" content=\"3 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\/\/wfh.org\/fr\/article\/la-fmh-publie-de-nouvelles-lignes-directrices-sur-la-therapie-genique-par-aav\/#article\",\"isPartOf\":{\"@id\":\"https:\/\/wfh.org\/fr\/article\/la-fmh-publie-de-nouvelles-lignes-directrices-sur-la-therapie-genique-par-aav\/\"},\"author\":{\"name\":\"Mitch Semienchuk\",\"@id\":\"https:\/\/wfh.org\/fr\/#\/schema\/person\/4aea5b13c1966452a640eef39423925b\"},\"headline\":\"La FMH publie de nouvelles lignes directrices sur la th\u00e9rapie g\u00e9nique par AAV\",\"datePublished\":\"2025-12-15T14:00:31+00:00\",\"dateModified\":\"2025-12-23T17:34:19+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\/\/wfh.org\/fr\/article\/la-fmh-publie-de-nouvelles-lignes-directrices-sur-la-therapie-genique-par-aav\/\"},\"wordCount\":592,\"publisher\":{\"@id\":\"https:\/\/wfh.org\/fr\/#organization\"},\"image\":{\"@id\":\"https:\/\/wfh.org\/fr\/article\/la-fmh-publie-de-nouvelles-lignes-directrices-sur-la-therapie-genique-par-aav\/#primaryimage\"},\"thumbnailUrl\":\"https:\/\/wfh.org\/wp-content\/uploads\/2025\/12\/GT-Recs-summary-article-header-FR.jpg\",\"articleSection\":[\"\u00c9ducation\",\"Featured 4 - 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