{"id":54144,"date":"2023-01-18T08:00:07","date_gmt":"2023-01-18T13:00:07","guid":{"rendered":"https:\/\/wfh.org\/article\/le-registre-de-therapie-genique-de-la-fmh-est-desormais-en-ligne\/"},"modified":"2024-04-09T09:12:47","modified_gmt":"2024-04-09T13:12:47","slug":"le-registre-de-therapie-genique-de-la-fmh-est-desormais-en-ligne","status":"publish","type":"post","link":"https:\/\/wfh.org\/fr\/article\/le-registre-de-therapie-genique-de-la-fmh-est-desormais-en-ligne\/","title":{"rendered":"Le Registre de th\u00e9rapie g\u00e9nique de la FMH est d\u00e9sormais en ligne !"},"content":{"rendered":"\t\t
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Le Registre de th\u00e9rapie g\u00e9nique (RTG)<\/a> de la FMH vise \u00e0 recueillir des donn\u00e9es importantes sur les patient\u00b7es recevant une th\u00e9rapie g\u00e9nique, que ce soit par le biais d\u2019un essai clinique ou d\u2019un produit commercialis\u00e9. Les donn\u00e9es recueillies seront une ressource pr\u00e9cieuse pour les patient\u00b7es, les m\u00e9decins, les chercheuses et chercheurs, les fabricant\u00b7es et les organismes de r\u00e9gulation. Proposer aux patient\u00b7es de soumettre des informations de qualit\u00e9 sur leur propre exp\u00e9rience de th\u00e9rapie g\u00e9nique, via l\u2019outil en ligne myGTR, c\u2019est leur permettre de jouer un r\u00f4le actif afin que la recherche comprenne mieux les enjeux de la th\u00e9rapie g\u00e9nique dans l\u2019h\u00e9mophilie.<\/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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La s\u00e9curit\u00e9 des patient\u00b7es est notre responsabilit\u00e9 \u00e0 toutes et tous. Recueillir des donn\u00e9es au sein d\u2019un m\u00eame registre mondial, le RTG de la FMH, est essentiel pour que les effets ind\u00e9sirables rares, chez une population de patient\u00b7es restreinte et dispers\u00e9e g\u00e9ographiquement, soient d\u00e9tect\u00e9s \u00e0 coup s\u00fbr. <\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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Dr Glenn Pierce (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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La th\u00e9rapie g\u00e9nique est une nouveaut\u00e9 prometteuse dans la gamme des traitements possibles pour les personnes atteintes d\u2019h\u00e9mophilie, leurs familles et leurs \u00e9quipes de soins. Cependant, la limitation de la dur\u00e9e du suivi des essais cliniques avant l\u2019approbation par les organismes de r\u00e9glementation ne permet pas de disposer, \u00e0 la fin de ces essais, de r\u00e9ponses aux questions sur la s\u00e9curit\u00e9 et l\u2019efficacit\u00e9 \u00e0 long terme de la th\u00e9rapie g\u00e9nique dans l\u2019h\u00e9mophilie. La meilleure fa\u00e7on de r\u00e9pondre \u00e0 ces questions est d\u2019utiliser des donn\u00e9es provenant de larges cohortes de patient\u00b7es recevant une th\u00e9rapie g\u00e9nique. En fin de compte, ce sera l\u2019accumulation de donn\u00e9es sur un grand nombre de patient\u00b7es inscrit\u00b7es dans un seul et m\u00eame registre qui nous permettra d\u2019identifier des probl\u00e8mes de s\u00e9curit\u00e9 inattendus li\u00e9s \u00e0 cette nouvelle technologie, de les surveiller, et de d\u00e9terminer la durabilit\u00e9 et la variabilit\u00e9 des produits de th\u00e9rapie g\u00e9nique. D\u00e9tecter des \u00e9v\u00e9nements de s\u00e9curit\u00e9 \u00e0 faible incidence ou \u00e0 retardement, en particulier dans le cas de maladies rares comme l\u2019h\u00e9mophilie, n\u00e9cessite un suivi de chaque patient\u00b7e sur le long terme, si possible tout au long de sa vie, dans un registre unique qui a pour but l\u2019inclusion de tous\u00b7tes les patient\u00b7es recevant ce type de traitement. Le RTG de la FMH sera \u00e9galement utilis\u00e9 pour faire du suivi \u00e0 long terme un standard de soins dans la th\u00e9rapie g\u00e9nique.<\/p>\n

Le RTG de la FMH a \u00e9t\u00e9 d\u00e9velopp\u00e9 en collaboration avec l\u2019International Society on Thrombosis and Haemostasis (ISTH), le European Haemophilia Consortium (EHC), la National Hemophilia Foundation (NHF) des \u00c9tats-Unis, l\u2019American Thrombosis and Hemostasis Network (ATHN), le groupe d\u2019\u00e9tude Patient-Reported Outcomes Burdens and Experiences (PROBE), les fabricant\u00b7es ainsi que des expert\u00b7es de la th\u00e9rapie g\u00e9nique. La FMH est fi\u00e8re de travailler en partenariat avec la United BioSource Corporation et Lifelink Systems pour le d\u00e9veloppement technologique de son RTG.<\/p>\n

Le RTG de la FMH<\/a> est d\u00e9sormais pr\u00eat \u00e0 inscrire toutes les personnes atteintes d\u2019h\u00e9mophilie ayant re\u00e7u une th\u00e9rapie g\u00e9nique, que ce soit par le biais d\u2019un essai clinique ou d\u2019un produit commercialis\u00e9. Les centres de traitement de l\u2019h\u00e9mophilie ainsi que les registres nationaux souhaitant participer au RTG sont pri\u00e9s de nous contacter \u00e0 l\u2019adresse GTR@wfh.org<\/a>.<\/p>\n

Le Registre de th\u00e9rapie g\u00e9nique est financ\u00e9 par nos Partenaires visionnaires fondateurs Biomarin, CSL Behring, Pfizer et Spark, ainsi que par notre Partenaire contributeur Takeda.<\/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":"

Afin que la s\u00e9curit\u00e9 des patient\u00b7es reste au premier plan du travail de la F\u00e9d\u00e9ration mondiale de l\u2019h\u00e9mophilie (FMH), nous avons d\u00e9velopp\u00e9 un registre pour surveiller la s\u00e9curit\u00e9 et l\u2019efficacit\u00e9 \u00e0 long terme de la th\u00e9rapie g\u00e9nique chez les personnes atteintes d\u2019h\u00e9mophilie : le Registre de th\u00e9rapie g\u00e9nique (RTG) de la FMH. Le lancement du RTG co\u00efncide avec l\u2019approbation de la th\u00e9rapie g\u00e9nique dans l\u2019h\u00e9mophilie \u00e0 la fois par la Food and Drug Administration (FDA) des \u00c9tats-Unis et par l\u2019Agence europ\u00e9enne des m\u00e9dicaments (EMA).<\/p>\n","protected":false},"author":13,"featured_media":54046,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"inline_featured_image":false,"footnotes":""},"categories":[177,203],"tags":[],"search-category":[85],"class_list":["post-54144","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-actualite-medicale","category-gene-therapy-fr","search-category-article"],"yoast_head":"\nLe Registre de th\u00e9rapie g\u00e9nique de la FMH est d\u00e9sormais en ligne ! | 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\/le-registre-de-therapie-genique-de-la-fmh-est-desormais-en-ligne\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Le Registre de th\u00e9rapie g\u00e9nique de la FMH est d\u00e9sormais en ligne !\" \/>\n<meta property=\"og:description\" content=\"Afin que la s\u00e9curit\u00e9 des patient\u00b7es reste au premier plan du travail de la F\u00e9d\u00e9ration mondiale de l\u2019h\u00e9mophilie (FMH), nous avons d\u00e9velopp\u00e9 un registre pour surveiller la s\u00e9curit\u00e9 et l\u2019efficacit\u00e9 \u00e0 long terme de la th\u00e9rapie g\u00e9nique chez les personnes atteintes d\u2019h\u00e9mophilie : le Registre de th\u00e9rapie g\u00e9nique (RTG) de la FMH. Le lancement du RTG co\u00efncide avec l\u2019approbation de la th\u00e9rapie g\u00e9nique dans l\u2019h\u00e9mophilie \u00e0 la fois par la Food and Drug Administration (FDA) des \u00c9tats-Unis et par l\u2019Agence europ\u00e9enne des m\u00e9dicaments (EMA).\" \/>\n<meta property=\"og:url\" content=\"https:\/\/wfh.org\/fr\/article\/le-registre-de-therapie-genique-de-la-fmh-est-desormais-en-ligne\/\" \/>\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=\"2023-01-18T13:00:07+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2024-04-09T13:12:47+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/wfh.org\/wp-content\/uploads\/2023\/01\/GTR-Now-Live-header-FR-1.gif\" \/>\n\t<meta property=\"og:image:width\" content=\"2500\" \/>\n\t<meta property=\"og:image:height\" content=\"1306\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/gif\" \/>\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\/le-registre-de-therapie-genique-de-la-fmh-est-desormais-en-ligne\/#article\",\"isPartOf\":{\"@id\":\"https:\/\/wfh.org\/fr\/article\/le-registre-de-therapie-genique-de-la-fmh-est-desormais-en-ligne\/\"},\"author\":{\"name\":\"Mitch Semienchuk\",\"@id\":\"https:\/\/wfh.org\/fr\/#\/schema\/person\/4aea5b13c1966452a640eef39423925b\"},\"headline\":\"Le Registre de th\u00e9rapie g\u00e9nique de la FMH est d\u00e9sormais en ligne !\",\"datePublished\":\"2023-01-18T13:00:07+00:00\",\"dateModified\":\"2024-04-09T13:12:47+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\/\/wfh.org\/fr\/article\/le-registre-de-therapie-genique-de-la-fmh-est-desormais-en-ligne\/\"},\"wordCount\":656,\"publisher\":{\"@id\":\"https:\/\/wfh.org\/fr\/#organization\"},\"image\":{\"@id\":\"https:\/\/wfh.org\/fr\/article\/le-registre-de-therapie-genique-de-la-fmh-est-desormais-en-ligne\/#primaryimage\"},\"thumbnailUrl\":\"https:\/\/wfh.org\/wp-content\/uploads\/2023\/01\/GTR-Now-Live-header-FR-1.gif\",\"articleSection\":[\"Actualit\u00e9 m\u00e9dicale\",\"Th\u00e9rapie g\u00e9nique\"],\"inLanguage\":\"fr-FR\"},{\"@type\":\"WebPage\",\"@id\":\"https:\/\/wfh.org\/fr\/article\/le-registre-de-therapie-genique-de-la-fmh-est-desormais-en-ligne\/\",\"url\":\"https:\/\/wfh.org\/fr\/article\/le-registre-de-therapie-genique-de-la-fmh-est-desormais-en-ligne\/\",\"name\":\"Le Registre de th\u00e9rapie g\u00e9nique de la FMH est d\u00e9sormais en ligne ! 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