{"id":122938,"date":"2024-10-15T09:00:13","date_gmt":"2024-10-15T13:00:13","guid":{"rendered":"https:\/\/wfh.org\/?p=122938"},"modified":"2024-10-15T14:38:01","modified_gmt":"2024-10-15T18:38:01","slug":"une-avancee-historique-lintegration-du-premier-patient-dans-le-registre-de-la-therapie-genique-de-la-fmh","status":"publish","type":"post","link":"https:\/\/wfh.org\/fr\/article\/une-avancee-historique-lintegration-du-premier-patient-dans-le-registre-de-la-therapie-genique-de-la-fmh\/","title":{"rendered":"Une avanc\u00e9e historique : l\u2019int\u00e9gration du premier patient dans 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 de la FMH<\/a> est un syst\u00e8me en ligne visant \u00e0 recueillir des donn\u00e9es sur les personnes atteintes d\u2019h\u00e9mophilie recevant une th\u00e9rapie g\u00e9nique, dans le cadre d\u2019un essai clinique ou bien en tant que produit approuv\u00e9. Cette initiative majeure renforcera notre compr\u00e9hension de la th\u00e9rapie g\u00e9nique pour l\u2019h\u00e9mophilie et assurera l\u2019acc\u00e8s de la communaut\u00e9 des troubles de la coagulation \u00e0 des preuves obtenues en temps utile sur la s\u00e9curit\u00e9 et l\u2019efficacit\u00e9 de ce traitement. La FMH est fi\u00e8re d\u2019annoncer que le 8 octobre 2024, le tout premier patient a \u00e9t\u00e9 int\u00e9gr\u00e9 au RTG de la FMH.<\/p>\n

La th\u00e9rapie g\u00e9nique est une avanc\u00e9e majeure dans le d\u00e9veloppement des options de traitement pour les personnes atteintes d\u2019h\u00e9mophilie, car elle offre la possibilit\u00e9 d\u2019am\u00e9liorer leurs r\u00e9sultats de sant\u00e9, et notamment leur qualit\u00e9 de vie, gr\u00e2ce \u00e0 une seule perfusion. Comme les personnes atteintes d\u2019h\u00e9mophilie sont peu nombreuses \u00e0 \u00eatre incluses dans les essais cliniques principaux, qui sont tr\u00e8s courts, il reste des questions sans r\u00e9ponse sur les r\u00e9sultats \u00e0 long terme de la th\u00e9rapie g\u00e9nique. Le RTG propose une solution\u00a0: une ressource pr\u00e9cieuse permettant de collecter efficacement des donn\u00e9es et de r\u00e9unir des preuves probantes sur les \u00e9ventuels risques, la s\u00e9curit\u00e9 et l\u2019efficacit\u00e9 \u00e0 long terme de la th\u00e9rapie g\u00e9nique.<\/p>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t

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L\u2019int\u00e9gration du premier patient dans le RTG de la FMH marque une avanc\u00e9e historique dans la s\u00e9curit\u00e9 et l\u2019efficacit\u00e9 de la th\u00e9rapie g\u00e9nique pour les patient\u00b7es atteint\u00b7es d\u2019h\u00e9mophilie dans le monde entier. Cette initiative internationale nous fournira des donn\u00e9es pr\u00e9cieuses pour guider les futurs traitements, et souligne notre engagement pour faire progresser les traitements et am\u00e9liorer la vie des personnes atteintes d\u2019un trouble de la coagulation.<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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\u2014 Dr Glenn Pierce (MD, PhD), vice-pr\u00e9sident m\u00e9dical de la FMH <\/p>\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

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L\u2019int\u00e9gration de la premi\u00e8re personne atteinte d\u2019h\u00e9mophilie dans le RTG de la FMH est le d\u00e9but d\u2019un vaste effort international des organisations partenaires, des personnes atteintes d\u2019h\u00e9mophilie, des registres nationaux et des centres de traitement de l\u2019h\u00e9mophilie (CTH) de toute la plan\u00e8te, afin d\u2019assurer que toutes les personnes atteintes d\u2019h\u00e9mophilie \u00e9ligibles soient invit\u00e9es \u00e0 participer. Ce n\u2019est que gr\u00e2ce \u00e0 une mobilisation mondiale que nous pourrons r\u00e9unir suffisamment de donn\u00e9es sur cette population atteinte d\u2019un trouble rare, pour pouvoir \u00e9clairer les d\u00e9cisions politiques et les choix de traitement.<\/p>\n

La FMH tient \u00e0 remercier le comit\u00e9 directeur du RTG de la FMH\u00a0 ainsi que le comit\u00e9 scientifique consultatif, co-pr\u00e9sid\u00e9 par Barbara Konkle (MD) et Flora Peyvandi (MD)\u00a0; nos organisations partenaires\u00a0; les agences de r\u00e9gulation\u00a0; les registres nationaux\u00a0; ainsi que les CTH et les personnes atteintes d\u2019h\u00e9mophilie qui ont travaill\u00e9 ensemble pour faire du RTG de la FMH une r\u00e9alit\u00e9\u00a0!<\/p>\n\n\n\n
Organisations partenaires<\/strong><\/p>\n
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  • European Association for Haemophilia and Allied Disorders (EAHAD)<\/li>\n
  • European Haemophilia Consortium (EHC)<\/li>\n
  • International Society on Thrombosis and Haemostasis (ISTH)<\/li>\n
  • National Bleeding Disorders Foundation (NBDF)<\/li>\n<\/ul>\n<\/td>\n
Compagnies pharmaceutiques<\/strong><\/p>\n
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  • BioMarin Pharmaceutical Inc.<\/li>\n
  • CSL Behring<\/li>\n
  • Pfizer<\/li>\n
  • Spark Therapeutics<\/li>\n<\/ul>\n<\/td>\n
Pays<\/strong><\/p>\n

Afrique du Sud, Allemagne, Arabie saoudite, Australie, Belgique, Br\u00e9sil, Canada, Cor\u00e9e, Espagne, \u00c9tats-Unis, France, Irlande, Italie, Japon, Pays-Bas, Royaume-Uni, Su\u00e8de, Suisse, Ta\u00efwan<\/td>\n<\/tr>\n<\/tbody>\n<\/table>\n

Pour en savoir plus sur le RTG de la FMH, cliquez ici<\/a>. Pour en savoir plus sur la th\u00e9rapie g\u00e9nique, consultez notre fiche d\u00e9taill\u00e9e sur le RTG<\/a> (en anglais).<\/p>\n

Le Registre de la th\u00e9rapie g\u00e9nique de la FMH b\u00e9n\u00e9ficie du soutien financier des partenaires fondateurs visionnaires 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":"

Excellente nouvelle ! Le Registre de la th\u00e9rapie g\u00e9nique (RTG) de la F\u00e9d\u00e9ration mondiale de l\u2019h\u00e9mophilie (FMH) est officiellement lanc\u00e9 avec l\u2019int\u00e9gration de son tout premier patient ! <\/p>\n","protected":false},"author":13,"featured_media":122052,"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-122938","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-featured-2-fr","category-gene-therapy-fr","search-category-article"],"yoast_head":"\nUne avanc\u00e9e historique : l\u2019int\u00e9gration du premier patient dans 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\/une-avancee-historique-lintegration-du-premier-patient-dans-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=\"Une avanc\u00e9e historique : l\u2019int\u00e9gration du premier patient dans le Registre de la th\u00e9rapie g\u00e9nique de la FMH\" \/>\n<meta property=\"og:description\" content=\"Excellente nouvelle ! Le Registre de la th\u00e9rapie g\u00e9nique (RTG) de la F\u00e9d\u00e9ration mondiale de l\u2019h\u00e9mophilie (FMH) est officiellement lanc\u00e9 avec l\u2019int\u00e9gration de son tout premier patient !\" \/>\n<meta property=\"og:url\" content=\"https:\/\/wfh.org\/fr\/article\/une-avancee-historique-lintegration-du-premier-patient-dans-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=\"2024-10-15T13:00:13+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2024-10-15T18:38:01+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/wfh.org\/wp-content\/uploads\/2024\/09\/GTR-first-patient-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\/une-avancee-historique-lintegration-du-premier-patient-dans-le-registre-de-la-therapie-genique-de-la-fmh\/#article\",\"isPartOf\":{\"@id\":\"https:\/\/wfh.org\/fr\/article\/une-avancee-historique-lintegration-du-premier-patient-dans-le-registre-de-la-therapie-genique-de-la-fmh\/\"},\"author\":{\"name\":\"Mitch Semienchuk\",\"@id\":\"https:\/\/wfh.org\/fr\/#\/schema\/person\/4aea5b13c1966452a640eef39423925b\"},\"headline\":\"Une avanc\u00e9e historique : l\u2019int\u00e9gration du premier patient dans le Registre de la th\u00e9rapie g\u00e9nique de la FMH\",\"datePublished\":\"2024-10-15T13:00:13+00:00\",\"dateModified\":\"2024-10-15T18:38:01+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\/\/wfh.org\/fr\/article\/une-avancee-historique-lintegration-du-premier-patient-dans-le-registre-de-la-therapie-genique-de-la-fmh\/\"},\"wordCount\":665,\"publisher\":{\"@id\":\"https:\/\/wfh.org\/fr\/#organization\"},\"image\":{\"@id\":\"https:\/\/wfh.org\/fr\/article\/une-avancee-historique-lintegration-du-premier-patient-dans-le-registre-de-la-therapie-genique-de-la-fmh\/#primaryimage\"},\"thumbnailUrl\":\"https:\/\/wfh.org\/wp-content\/uploads\/2024\/09\/GTR-first-patient-article-header-FR.jpg\",\"articleSection\":[\"Featured 2 - 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