{"id":133347,"date":"2025-02-07T10:00:54","date_gmt":"2025-02-07T15:00:54","guid":{"rendered":"https:\/\/wfh.org\/article\/la-fmh-y-la-athn-colaboran-en-el-registro-de-terapia-genica-de-la-fmh\/"},"modified":"2025-02-11T11:56:37","modified_gmt":"2025-02-11T16:56:37","slug":"la-fmh-y-la-athn-colaboran-en-el-registro-de-terapia-genica-de-la-fmh","status":"publish","type":"post","link":"https:\/\/wfh.org\/es\/article\/la-fmh-y-la-athn-colaboran-en-el-registro-de-terapia-genica-de-la-fmh\/","title":{"rendered":"La FMH y la ATHN colaboran en el Registro de Terapia G\u00e9nica de la FMH"},"content":{"rendered":"\t\t
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El Registro de Terapia G\u00e9nica (RTG) de la FMH<\/a> es un registro prospectivo, longitudinal y de observaci\u00f3n dise\u00f1ado para recolectar datos de largo plazo sobre personas con hemofilia (PCH) que reciben terapia g\u00e9nica. El objetivo principal del RTG es determinar la seguridad a largo plazo de las terapias g\u00e9nicas con factor VIII y factor IX para PCH. Los objetivos secundarios son determinar la eficacia a largo plazo y la durabilidad de las terapias g\u00e9nicas con factor VIII y factor IX en PCH, as\u00ed como valorar la calidad de vida y la carga de la enfermedad a largo plazo despu\u00e9s de la infusi\u00f3n de terapia g\u00e9nica. Los datos que aportar\u00e1 la ATHN<\/a> \u2013organizaci\u00f3n sin fines de lucro dedicada a mejorar las vidas de las personas afectadas por trastornos hemorr\u00e1gicos y de la coagulaci\u00f3n\u2013, junto con otros registros nacionales de todo el mundo, enriquecer\u00e1n a\u00fan m\u00e1s los datos del RTG, convirti\u00e9ndolo en un recurso todav\u00eda m\u00e1s valioso.<\/p>\n

La creaci\u00f3n de un registro mundial es fundamental a fin de garantizar que los datos necesarios para valorar riesgos, seguridad y eficacia a largo plazo de la terapia g\u00e9nica para la hemofilia se encuentren disponibles para la comunidad de trastornos de la coagulaci\u00f3n. La FMH y la ATHN colaborar\u00e1n con miras a este fin como parte de este importante proyecto.<\/p>\n

Si desea obtener m\u00e1s informaci\u00f3n sobre el Registro de Terapia G\u00e9nica (RTG) de la FMH haga clic aqu\u00ed<\/a>. Para obtener m\u00e1s informaci\u00f3n sobre la Red Estadounidense sobre Trombosis y Hemostasia (ATHN por su sigla en ingl\u00e9s) escriba a support@athn.org<\/a>.<\/p>\n

El Registro de Terapia G\u00e9nica de la FMH recibe apoyo financiero de las aliadas visionarias de la FMH, BioMarin Pharmaceutical Inc., CSL Behring, Pfizer y 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 Federaci\u00f3n Mundial de Hemofilia (FMH) y la Red Estadounidense sobre Trombosis y Hemostasia (ATHN por su sigla en ingl\u00e9s) tienen el gusto de anunciar su colaboraci\u00f3n en el Registro de Terapia G\u00e9nica de la FMH. Como principal registro de datos para los centros de tratamiento de hemofilia (CTH) en Estados Unidos, la ATHN aportar\u00e1 datos sobre terapia g\u00e9nica al registro internacional de terapia g\u00e9nica de la FMH. <\/p>\n","protected":false},"author":13,"featured_media":133261,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"inline_featured_image":false,"footnotes":""},"categories":[337,231],"tags":[],"search-category":[85],"class_list":["post-133347","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-featured-2-es","category-gene-therapy-es","search-category-article"],"yoast_head":"\nLa FMH y la ATHN colaboran en el Registro de Terapia G\u00e9nica de la FMH | FMH - Federaci\u00f3n Mundial de Hemofilia<\/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\/es\/article\/la-fmh-y-la-athn-colaboran-en-el-registro-de-terapia-genica-de-la-fmh\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"La FMH y la ATHN colaboran en el Registro de Terapia G\u00e9nica de la FMH\" \/>\n<meta property=\"og:description\" content=\"La Federaci\u00f3n Mundial de Hemofilia (FMH) y la Red Estadounidense sobre Trombosis y Hemostasia (ATHN por su sigla en ingl\u00e9s) tienen el gusto de anunciar su colaboraci\u00f3n en el Registro de Terapia G\u00e9nica de la FMH. Como principal registro de datos para los centros de tratamiento de hemofilia (CTH) en Estados Unidos, la ATHN aportar\u00e1 datos sobre terapia g\u00e9nica al registro internacional de terapia g\u00e9nica de la FMH.\" \/>\n<meta property=\"og:url\" content=\"https:\/\/wfh.org\/es\/article\/la-fmh-y-la-athn-colaboran-en-el-registro-de-terapia-genica-de-la-fmh\/\" \/>\n<meta property=\"og:site_name\" content=\"FMH - Federaci\u00f3n Mundial de Hemofilia\" \/>\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=\"2025-02-11T16:56:37+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/wfh.org\/wp-content\/uploads\/2025\/02\/WFH-ATHN-announcement-article-header-SP.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=\"Escrito por\" \/>\n\t<meta name=\"twitter:data1\" content=\"Mitch Semienchuk\" \/>\n\t<meta name=\"twitter:label2\" content=\"Tiempo de lectura\" \/>\n\t<meta name=\"twitter:data2\" content=\"2 minutos\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\/\/wfh.org\/es\/article\/la-fmh-y-la-athn-colaboran-en-el-registro-de-terapia-genica-de-la-fmh\/#article\",\"isPartOf\":{\"@id\":\"https:\/\/wfh.org\/es\/article\/la-fmh-y-la-athn-colaboran-en-el-registro-de-terapia-genica-de-la-fmh\/\"},\"author\":{\"name\":\"Mitch Semienchuk\",\"@id\":\"https:\/\/wfh.org\/es\/#\/schema\/person\/4aea5b13c1966452a640eef39423925b\"},\"headline\":\"La FMH y la ATHN colaboran en el Registro de Terapia G\u00e9nica de la FMH\",\"datePublished\":\"2025-02-07T15:00:54+00:00\",\"dateModified\":\"2025-02-11T16:56:37+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\/\/wfh.org\/es\/article\/la-fmh-y-la-athn-colaboran-en-el-registro-de-terapia-genica-de-la-fmh\/\"},\"wordCount\":328,\"publisher\":{\"@id\":\"https:\/\/wfh.org\/es\/#organization\"},\"image\":{\"@id\":\"https:\/\/wfh.org\/es\/article\/la-fmh-y-la-athn-colaboran-en-el-registro-de-terapia-genica-de-la-fmh\/#primaryimage\"},\"thumbnailUrl\":\"https:\/\/wfh.org\/wp-content\/uploads\/2025\/02\/WFH-ATHN-announcement-article-header-SP.jpg\",\"articleSection\":[\"Featured 2 - 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