{"id":158734,"date":"2025-09-29T09:00:37","date_gmt":"2025-09-29T13:00:37","guid":{"rendered":"https:\/\/wfh.org\/article\/un-nouvel-article-appelle-a-une-action-durgence-pour-proteger-les-donnees-liees-a-la-therapie-genique\/"},"modified":"2025-10-06T11:11:35","modified_gmt":"2025-10-06T15:11:35","slug":"un-nouvel-article-appelle-a-une-action-durgence-pour-proteger-les-donnees-liees-a-la-therapie-genique","status":"publish","type":"post","link":"https:\/\/wfh.org\/fr\/article\/un-nouvel-article-appelle-a-une-action-durgence-pour-proteger-les-donnees-liees-a-la-therapie-genique\/","title":{"rendered":"Un nouvel article appelle \u00e0 une action d\u2019urgence pour prot\u00e9ger les donn\u00e9es li\u00e9es \u00e0 la th\u00e9rapie g\u00e9nique"},"content":{"rendered":"\t\t
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Certaines entreprises quittent les programmes de th\u00e9rapie g\u00e9nique ou les r\u00e9duisent, tandis que d\u2019autres continuent \u00e0 investir dans leur d\u00e9veloppement et leur commercialisation. Pourtant, les donn\u00e9es cruciales des essais cliniques de tous ces programmes restent fragment\u00e9es entre les centres de traitement, les registres et les bases de donn\u00e9es des entreprises. Pr\u00e9server ces donn\u00e9es n\u2019est pas qu\u2019une n\u00e9cessit\u00e9 scientifique, c\u2019est une responsabilit\u00e9 d\u2019ordre \u00e9thique. Assurer la s\u00e9curit\u00e9 \u00e0 long terme des donn\u00e9es est essentiel pour surveiller les risques, prot\u00e9ger les futur\u00b7es patient\u00b7es et assurer le d\u00e9veloppement responsable de nouvelles th\u00e9rapies.<\/p>\n

Un r\u00e9cent article publi\u00e9 dans Haemophilia<\/em>, la revue officielle de la FMH, appelle d\u2019urgence \u00e0 une collaboration permettant de consolider les donn\u00e9es des essais cliniques. Le Registre mondial de la th\u00e9rapie g\u00e9nique (RMTC) de la F\u00e9d\u00e9ration mondiale de l\u2019h\u00e9mophilie (FMH), approuv\u00e9 par le comit\u00e9 des m\u00e9dicaments \u00e0 usage humain (CHMP) de l\u2019Agence europ\u00e9enne des m\u00e9dicaments (EMA), est la solution parfaite\u00a0: une plateforme unique et mondiale qui pr\u00e9serve et analyse les donn\u00e9es de tous les essais et programmes de commercialisation. La consolidation des donn\u00e9es d\u2019essais cliniques est \u00e0 la fois un imp\u00e9ratif scientifique et une obligation \u00e9thique pour respecter les contributions des patient\u00b7es.<\/p>\n

Pour lire l\u2019article \u00ab\u00a0The Critical Need to Consolidate All Gene Therapy Data in Haemophilia\u00a0\u00bb (en anglais), 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":"

La th\u00e9rapie g\u00e9nique a beaucoup progress\u00e9 depuis les essais pionniers des ann\u00e9es 1990, puisqu\u2019il y a eu plusieurs approbations r\u00e9centes en mati\u00e8re de r\u00e9glementation aux \u00c9tats-Unis et en Europe. Ces approbations ont \u00e9t\u00e9 rendues possibles par le courage des 395 personnes atteintes d\u2019h\u00e9mophilie qui se sont engag\u00e9es en participant aux essais cliniques de th\u00e9rapie g\u00e9nique et en partageant leurs donn\u00e9es, tout \u00e0 fait conscientes des risques, de l\u2019incertitude et de l\u2019impossibilit\u00e9 d\u2019un redosage. Elles ne l\u2019ont pas fait seulement pour leur sant\u00e9 mais pour faire avancer la science et pour que cela b\u00e9n\u00e9ficie \u00e0 la communaut\u00e9 dans son ensemble. Aujourd\u2019hui, leurs contributions risquent d\u2019\u00eatre perdues. Un nouvel article intitul\u00e9 \u00ab The Critical Need to Consolidate All Gene Therapy Data in Haemophilia \u00bb appelle \u00e0 une action d\u2019urgence pour prot\u00e9ger les donn\u00e9es li\u00e9es \u00e0 la th\u00e9rapie g\u00e9nique.<\/p>\n","protected":false},"author":13,"featured_media":157660,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"inline_featured_image":false,"footnotes":""},"categories":[177,195],"tags":[],"search-category":[85],"class_list":["post-158734","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-actualite-medicale","category-recherche","search-category-article"],"yoast_head":"\nUn nouvel article appelle \u00e0 une action d\u2019urgence pour prot\u00e9ger les donn\u00e9es li\u00e9es \u00e0 la th\u00e9rapie g\u00e9nique | 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\/un-nouvel-article-appelle-a-une-action-durgence-pour-proteger-les-donnees-liees-a-la-therapie-genique\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Un nouvel article appelle \u00e0 une action d\u2019urgence pour prot\u00e9ger les donn\u00e9es li\u00e9es \u00e0 la th\u00e9rapie g\u00e9nique\" \/>\n<meta property=\"og:description\" content=\"La th\u00e9rapie g\u00e9nique a beaucoup progress\u00e9 depuis les essais pionniers des ann\u00e9es 1990, puisqu\u2019il y a eu plusieurs approbations r\u00e9centes en mati\u00e8re de r\u00e9glementation aux \u00c9tats-Unis et en Europe. Ces approbations ont \u00e9t\u00e9 rendues possibles par le courage des 395 personnes atteintes d\u2019h\u00e9mophilie qui se sont engag\u00e9es en participant aux essais cliniques de th\u00e9rapie g\u00e9nique et en partageant leurs donn\u00e9es, tout \u00e0 fait conscientes des risques, de l\u2019incertitude et de l\u2019impossibilit\u00e9 d\u2019un redosage. Elles ne l\u2019ont pas fait seulement pour leur sant\u00e9 mais pour faire avancer la science et pour que cela b\u00e9n\u00e9ficie \u00e0 la communaut\u00e9 dans son ensemble. Aujourd\u2019hui, leurs contributions risquent d\u2019\u00eatre perdues. Un nouvel article intitul\u00e9 \u00ab The Critical Need to Consolidate All Gene Therapy Data in Haemophilia \u00bb appelle \u00e0 une action d\u2019urgence pour prot\u00e9ger les donn\u00e9es li\u00e9es \u00e0 la th\u00e9rapie g\u00e9nique.\" \/>\n<meta property=\"og:url\" content=\"https:\/\/wfh.org\/fr\/article\/un-nouvel-article-appelle-a-une-action-durgence-pour-proteger-les-donnees-liees-a-la-therapie-genique\/\" \/>\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=\"2025-09-29T13:00:37+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2025-10-06T15:11:35+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/wfh.org\/wp-content\/uploads\/2025\/09\/New-article-calls-for-urgent-action-to-safeguard-gene-therapy-data-header-EN.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=\"1 minute\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\/\/wfh.org\/fr\/article\/un-nouvel-article-appelle-a-une-action-durgence-pour-proteger-les-donnees-liees-a-la-therapie-genique\/#article\",\"isPartOf\":{\"@id\":\"https:\/\/wfh.org\/fr\/article\/un-nouvel-article-appelle-a-une-action-durgence-pour-proteger-les-donnees-liees-a-la-therapie-genique\/\"},\"author\":{\"name\":\"Mitch Semienchuk\",\"@id\":\"https:\/\/wfh.org\/fr\/#\/schema\/person\/4aea5b13c1966452a640eef39423925b\"},\"headline\":\"Un nouvel article appelle \u00e0 une action d\u2019urgence pour prot\u00e9ger les donn\u00e9es li\u00e9es \u00e0 la th\u00e9rapie g\u00e9nique\",\"datePublished\":\"2025-09-29T13:00:37+00:00\",\"dateModified\":\"2025-10-06T15:11:35+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\/\/wfh.org\/fr\/article\/un-nouvel-article-appelle-a-une-action-durgence-pour-proteger-les-donnees-liees-a-la-therapie-genique\/\"},\"wordCount\":267,\"publisher\":{\"@id\":\"https:\/\/wfh.org\/fr\/#organization\"},\"image\":{\"@id\":\"https:\/\/wfh.org\/fr\/article\/un-nouvel-article-appelle-a-une-action-durgence-pour-proteger-les-donnees-liees-a-la-therapie-genique\/#primaryimage\"},\"thumbnailUrl\":\"https:\/\/wfh.org\/wp-content\/uploads\/2025\/09\/New-article-calls-for-urgent-action-to-safeguard-gene-therapy-data-header-EN.jpg\",\"articleSection\":[\"Actualit\u00e9 m\u00e9dicale\",\"Recherche\"],\"inLanguage\":\"fr-FR\"},{\"@type\":\"WebPage\",\"@id\":\"https:\/\/wfh.org\/fr\/article\/un-nouvel-article-appelle-a-une-action-durgence-pour-proteger-les-donnees-liees-a-la-therapie-genique\/\",\"url\":\"https:\/\/wfh.org\/fr\/article\/un-nouvel-article-appelle-a-une-action-durgence-pour-proteger-les-donnees-liees-a-la-therapie-genique\/\",\"name\":\"Un nouvel article appelle \u00e0 une action d\u2019urgence pour prot\u00e9ger les donn\u00e9es li\u00e9es \u00e0 la th\u00e9rapie g\u00e9nique | FMH - 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