{"id":133402,"date":"2025-02-07T10:00:54","date_gmt":"2025-02-07T15:00:54","guid":{"rendered":"https:\/\/wfh.org\/article\/la-fmh-et-lathn-debutent-une-collaboration-pour-le-registre-de-la-therapie-genique-de-la-fmh\/"},"modified":"2025-02-11T11:56:40","modified_gmt":"2025-02-11T16:56:40","slug":"la-fmh-et-lathn-debutent-une-collaboration-pour-le-registre-de-la-therapie-genique-de-la-fmh","status":"publish","type":"post","link":"https:\/\/wfh.org\/fr\/article\/la-fmh-et-lathn-debutent-une-collaboration-pour-le-registre-de-la-therapie-genique-de-la-fmh\/","title":{"rendered":"La FMH et l\u2019ATHN d\u00e9butent une collaboration pour le Registre de la th\u00e9rapie g\u00e9nique de la FMH"},"content":{"rendered":"\t\t
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Le Registre de la th\u00e9rapie g\u00e9nique (RTG)<\/a> est un registre prospectif, observationnel et longitudinal con\u00e7u pour recueillir des donn\u00e9es \u00e0 long terme sur les personnes atteintes d\u2019h\u00e9mophilie qui b\u00e9n\u00e9ficient de la th\u00e9rapie g\u00e9nique. L\u2019objectif principal du Registre de la th\u00e9rapie g\u00e9nique est de d\u00e9terminer la s\u00e9curit\u00e9 \u00e0 long terme des th\u00e9rapies g\u00e9niques du facteur\u202fVIII et du facteur\u202fIX pour les personnes atteintes d\u2019h\u00e9mophilie. Les objectifs secondaires sont de d\u00e9terminer l\u2019efficacit\u00e9 \u00e0 long terme et la p\u00e9rennit\u00e9 des th\u00e9rapies g\u00e9niques du facteur VIII et du facteur IX chez les personnes atteintes d\u2019h\u00e9mophilie, et d\u2019\u00e9valuer la qualit\u00e9 de vie \u00e0 long terme et le fardeau de la maladie apr\u00e8s l\u2019administration de la th\u00e9rapie g\u00e9nique. Les donn\u00e9es ajout\u00e9es par l\u2019ATHN<\/a>, association \u00e0 but non lucratif d\u00e9di\u00e9e \u00e0 l\u2019am\u00e9lioration de la vie des personnes atteintes d\u2019un trouble de la coagulation, viendront enrichir les donn\u00e9es du RTG, aux c\u00f4t\u00e9s d\u2019autres registres nationaux du monde entier, pour en faire une ressource encore plus utile.<\/p>\n

La cr\u00e9ation d\u2019un registre mondial est essentielle pour disposer des donn\u00e9es n\u00e9cessaires afin que l\u2019\u00e9valuation des risques, de la s\u00e9curit\u00e9 et de l\u2019efficacit\u00e9 \u00e0 long terme de la th\u00e9rapie g\u00e9nique dans le traitement de l\u2019h\u00e9mophilie soit accessible \u00e0 toute la communaut\u00e9 des troubles de la coagulation. La FMH et l\u2019ATHN travailleront ensemble dans ce but, pour soutenir ce projet fondamental.<\/p>\n

Pour en savoir plus sur le Registre de la th\u00e9rapie g\u00e9nique (RTG), cliquez ici<\/a>. Pour en savoir plus sur l\u2019American Thrombosis and Hemostasis Network (ATHN), contactez support@athn.org<\/a>.<\/p>\n

Le Registre de la th\u00e9rapie g\u00e9nique est soutenu par les Partenaires visionnaires fondateurs de la FMH, BioMarin Pharmaceutical Inc., CSL Behring, Pfizer et Spark Therapeutics.<\/em><\/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 F\u00e9d\u00e9ration mondiale de l\u2019h\u00e9mophilie (FMH) et l\u2019American Thrombosis and Hemostasis Network (ATHN) ont le plaisir d\u2019annoncer leur collaboration pour le Registre de la th\u00e9rapie g\u00e9nique de la FMH. En tant que principal registre de donn\u00e9es pour les centres de traitement de l\u2019h\u00e9mophilie (CTH) aux \u00c9tats-Unis, l\u2019ATHN fournira des donn\u00e9es sur la th\u00e9rapie g\u00e9nique au registre international de la FMH.<\/p>\n","protected":false},"author":13,"featured_media":133258,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"inline_featured_image":false,"footnotes":""},"categories":[336,203],"tags":[],"search-category":[85],"class_list":["post-133402","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-featured-2-fr","category-gene-therapy-fr","search-category-article"],"yoast_head":"\nLa FMH et l\u2019ATHN d\u00e9butent une collaboration pour le Registre de la th\u00e9rapie g\u00e9nique de la FMH | 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-et-lathn-debutent-une-collaboration-pour-le-registre-de-la-therapie-genique-de-la-fmh\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"La FMH et l\u2019ATHN d\u00e9butent une collaboration pour le Registre de la th\u00e9rapie g\u00e9nique de la FMH\" \/>\n<meta property=\"og:description\" content=\"La F\u00e9d\u00e9ration mondiale de l\u2019h\u00e9mophilie (FMH) et l\u2019American Thrombosis and Hemostasis Network (ATHN) ont le plaisir d\u2019annoncer leur collaboration pour le Registre de la th\u00e9rapie g\u00e9nique de la FMH. En tant que principal registre de donn\u00e9es pour les centres de traitement de l\u2019h\u00e9mophilie (CTH) aux \u00c9tats-Unis, l\u2019ATHN fournira des donn\u00e9es sur la th\u00e9rapie g\u00e9nique au registre international de la FMH.\" \/>\n<meta property=\"og:url\" content=\"https:\/\/wfh.org\/fr\/article\/la-fmh-et-lathn-debutent-une-collaboration-pour-le-registre-de-la-therapie-genique-de-la-fmh\/\" \/>\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=\"2025-02-07T15:00:54+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2025-02-11T16:56:40+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/wfh.org\/wp-content\/uploads\/2025\/02\/WFH-ATHN-announcement-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=\"2 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-et-lathn-debutent-une-collaboration-pour-le-registre-de-la-therapie-genique-de-la-fmh\/#article\",\"isPartOf\":{\"@id\":\"https:\/\/wfh.org\/fr\/article\/la-fmh-et-lathn-debutent-une-collaboration-pour-le-registre-de-la-therapie-genique-de-la-fmh\/\"},\"author\":{\"name\":\"Mitch Semienchuk\",\"@id\":\"https:\/\/wfh.org\/fr\/#\/schema\/person\/4aea5b13c1966452a640eef39423925b\"},\"headline\":\"La FMH et l\u2019ATHN d\u00e9butent une collaboration pour le Registre de la th\u00e9rapie g\u00e9nique de la FMH\",\"datePublished\":\"2025-02-07T15:00:54+00:00\",\"dateModified\":\"2025-02-11T16:56:40+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\/\/wfh.org\/fr\/article\/la-fmh-et-lathn-debutent-une-collaboration-pour-le-registre-de-la-therapie-genique-de-la-fmh\/\"},\"wordCount\":346,\"publisher\":{\"@id\":\"https:\/\/wfh.org\/fr\/#organization\"},\"image\":{\"@id\":\"https:\/\/wfh.org\/fr\/article\/la-fmh-et-lathn-debutent-une-collaboration-pour-le-registre-de-la-therapie-genique-de-la-fmh\/#primaryimage\"},\"thumbnailUrl\":\"https:\/\/wfh.org\/wp-content\/uploads\/2025\/02\/WFH-ATHN-announcement-article-header-FR.jpg\",\"articleSection\":[\"Featured 2 - 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