{"id":56742,"date":"2022-12-06T20:26:27","date_gmt":"2022-12-07T01:26:27","guid":{"rendered":"https:\/\/wfh.org\/recoleccion-de-datos\/registro-de-terapia-genica\/"},"modified":"2025-02-20T10:16:35","modified_gmt":"2025-02-20T15:16:35","slug":"registro-de-terapia-genica","status":"publish","type":"page","link":"https:\/\/wfh.org\/es\/investigacion-y-recoleccion-de-datos\/registro-de-terapia-genica\/","title":{"rendered":"Registro de terapia g\u00e9nica"},"content":{"rendered":"\t\t<div data-elementor-type=\"wp-page\" data-elementor-id=\"56742\" class=\"elementor elementor-56742 elementor-51966\" data-elementor-post-type=\"page\">\n\t\t\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-ae28895 elementor-section-full_width elementor-reverse-mobile elementor-section-height-default elementor-section-height-default\" data-id=\"ae28895\" data-element_type=\"section\" data-e-type=\"section\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;}\">\n\t\t\t\t\t\t\t<div class=\"elementor-background-overlay\"><\/div>\n\t\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-50 elementor-top-column elementor-element elementor-element-d6ad73d elementor-hidden-mobile\" data-id=\"d6ad73d\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<section class=\"elementor-section elementor-inner-section elementor-element elementor-element-c2a6ff7 elementor-section-full_width elementor-section-height-default elementor-section-height-default\" data-id=\"c2a6ff7\" data-element_type=\"section\" data-e-type=\"section\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;,&quot;sticky&quot;:&quot;top&quot;,&quot;sticky_offset&quot;:15,&quot;sticky_on&quot;:[&quot;desktop&quot;,&quot;tablet&quot;,&quot;mobile&quot;],&quot;sticky_effects_offset&quot;:0,&quot;sticky_anchor_link_offset&quot;:0}\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-inner-column elementor-element elementor-element-ed0c27f\" data-id=\"ed0c27f\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-9f6d896 elementor-widget elementor-widget-heading\" data-id=\"9f6d896\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<span class=\"elementor-heading-title elementor-size-default\">REGISTRO DE TERAPIA G\u00c9NICA<\/span>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-065b20e elementor-widget elementor-widget-heading\" data-id=\"065b20e\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<span class=\"elementor-heading-title elementor-size-default\"><a href=\"#participate\">Participe en el RTG<\/a><\/span>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-772740c elementor-widget elementor-widget-heading\" data-id=\"772740c\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<span class=\"elementor-heading-title elementor-size-default\"><a href=\"#governance\">Gobernanza del RTG<\/a><\/span>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-cf49b4a elementor-widget elementor-widget-heading\" data-id=\"cf49b4a\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<span class=\"elementor-heading-title elementor-size-default\"><a href=\"#data\">Datos del RTG<\/a><\/span>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-51749f3 elementor-widget elementor-widget-heading\" data-id=\"51749f3\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<span class=\"elementor-heading-title elementor-size-default\"><a href=\"#programs\">Programas del RTG<\/a><\/span>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-07d5021 elementor-widget elementor-widget-heading\" data-id=\"07d5021\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<span class=\"elementor-heading-title elementor-size-default\"><a href=\"#myGTR\">myGTR<\/a><\/span>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-a8f3156 elementor-widget elementor-widget-heading\" data-id=\"a8f3156\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<span class=\"elementor-heading-title elementor-size-default\"><a href=\"#support\">Apoyo para la comunidad del RTG<\/a><\/span>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-f787844 elementor-widget elementor-widget-heading\" data-id=\"f787844\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<span class=\"elementor-heading-title elementor-size-default\"><a href=\"#publications\">Publicaciones <\/a><\/span>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-d2ce851 elementor-widget elementor-widget-heading\" data-id=\"d2ce851\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<span class=\"elementor-heading-title elementor-size-default\"><a href=\"#contact-us\">Comun\u00edquese con el equipo del RTG<\/a><\/span>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-d7b9e5e elementor-widget elementor-widget-heading\" data-id=\"d7b9e5e\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<span class=\"elementor-heading-title elementor-size-default\"><a href=\"#acknowledgement\">Reconocimiento<\/a><\/span>\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\t<\/div>\n\t\t<\/div>\n\t\t\t\t<div class=\"elementor-column elementor-col-50 elementor-top-column elementor-element elementor-element-c57b2cb\" data-id=\"c57b2cb\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-6c03d7f elementor-widget elementor-widget-template\" data-id=\"6c03d7f\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"template.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<div class=\"elementor-template\">\n\t\t\t\t\t<div data-elementor-type=\"section\" data-elementor-id=\"25311\" class=\"elementor elementor-25311 elementor-25306 elementor-25306\" data-elementor-post-type=\"elementor_library\">\n\t\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-4897f92e elementor-section-full_width elementor-section-height-default elementor-section-height-default\" data-id=\"4897f92e\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-75983c78\" data-id=\"75983c78\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<section class=\"elementor-section elementor-inner-section elementor-element elementor-element-21504386 elementor-section-full_width elementor-section-height-default elementor-section-height-default\" data-id=\"21504386\" data-element_type=\"section\" data-e-type=\"section\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;}\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-inner-column elementor-element elementor-element-7ba5d59b\" data-id=\"7ba5d59b\" data-element_type=\"column\" data-e-type=\"column\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;}\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-4f85140c elementor-widget elementor-widget-spacer\" data-id=\"4f85140c\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"spacer.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<div class=\"elementor-spacer\">\n\t\t\t<div class=\"elementor-spacer-inner\"><\/div>\n\t\t<\/div>\n\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\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\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-2eb40b0 elementor-widget elementor-widget-heading\" data-id=\"2eb40b0\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h1 class=\"elementor-heading-title elementor-size-default\">Registro de terapia g\u00e9nica<\/h1>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-88af5d9 elementor-widget elementor-widget-text-editor\" data-id=\"88af5d9\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p class=\"\">El Registro de Terapia G\u00e9nica (RTG) 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.<\/p>\n<p class=\"\">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 PCTC, 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.<\/p>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-faffcc4 elementor-icon-list--layout-inline elementor-list-item-link-full_width elementor-widget elementor-widget-icon-list\" data-id=\"faffcc4\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"icon-list.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<ul class=\"elementor-icon-list-items elementor-inline-items\">\n\t\t\t\t\t\t\t<li class=\"elementor-icon-list-item elementor-inline-item\">\n\t\t\t\t\t\t\t\t\t\t\t<a href=\"https:\/\/wfh.org\/wp-content\/uploads\/2022\/10\/GTR-fact-sheet-ES.pdf\" target=\"_blank\">\n\n\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-icon-list-icon\">\n\t\t\t\t\t\t\t<svg xmlns=\"http:\/\/www.w3.org\/2000\/svg\" width=\"40.918\" height=\"53.2\" viewBox=\"0 0 40.918 53.2\"><g id=\"Group_6750\" data-name=\"Group 6750\" transform=\"translate(1.5 6.5)\"><g id=\"Group_6757\" data-name=\"Group 6757\"><path id=\"Path_1011\" data-name=\"Path 1011\" d=\"M36.95,56.517a2.978,2.978,0,0,1-2.3-1.108,3.04,3.04,0,0,1-.085-4.176c.852-1.108,2.557-2.046,4.943-2.9a25.466,25.466,0,0,1,2.727-.767,34.887,34.887,0,0,0,1.7-3.58,34.071,34.071,0,0,0,1.278-3.409c-1.364-2.3-2.642-5.029-2.557-7.159a3.138,3.138,0,0,1,2.9-3.324h0a2.937,2.937,0,0,1,3.324,2.131c.682,2.045,0,5.2-.767,7.926A26.892,26.892,0,0,0,50.5,43.477c.767.938,1.449,1.79,2.216,2.642,2.983,0,5.8.256,7.5,1.193a3.021,3.021,0,0,1,1.7,3.665,3.061,3.061,0,0,1-3.58,2.3c-2.216-.256-4.773-2.386-6.733-4.432a43.074,43.074,0,0,0-4.432.426c-1.108.17-2.216.341-3.239.6a16.438,16.438,0,0,1-1.108,1.79,14.527,14.527,0,0,1-4.091,4.347A3.58,3.58,0,0,1,36.95,56.517Zm3.324-5.625a9.247,9.247,0,0,0-3.75,2.046c-.256.256-.256.426.085.852.17.17.256.341.938,0A11.343,11.343,0,0,0,40.274,50.892Zm15.171-1.96a6.868,6.868,0,0,0,3.239,1.875c.341.085.511.085.767-.511.085-.17.085-.256-.426-.6A10.735,10.735,0,0,0,55.444,48.932Zm-8.352-5.54c-.256.682-.511,1.278-.682,1.7-.256.682-.6,1.278-.852,1.875a6.579,6.579,0,0,1,1.278-.17c.852-.085,1.7-.256,2.557-.256-.426-.511-.767-.938-.938-1.193C48.115,44.841,47.6,44.159,47.092,43.392ZM45.9,32.738c-.341.085-.6.085-.6.767A8.949,8.949,0,0,0,46.325,37a8.659,8.659,0,0,0,.17-3.835c-.17-.426-.256-.426-.6-.426Z\" transform=\"translate(-28.311 -21.752)\" fill=\"#ed174c\"><\/path><path id=\"Path_1012\" data-name=\"Path 1012\" d=\"M1404.235,4242.746v50.2h37.918v-38.123l-12.877-12.077Z\" transform=\"translate(-1404.234 -4247.746)\" fill=\"none\" stroke=\"#ed174c\" stroke-width=\"3\"><\/path><path id=\"Path_1013\" data-name=\"Path 1013\" d=\"M1417.091,4242.746v12.292h13.44\" transform=\"translate(-1392.057 -4248.397)\" fill=\"none\" stroke=\"#ed174c\" stroke-width=\"3\"><\/path><\/g><\/g><\/svg>\t\t\t\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-icon-list-text\">Hocha informativa del RTG<\/span>\n\t\t\t\t\t\t\t\t\t\t\t<\/a>\n\t\t\t\t\t\t\t\t\t<\/li>\n\t\t\t\t\t\t<\/ul>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-aaac82d elementor-widget elementor-widget-spacer\" data-id=\"aaac82d\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"spacer.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<div class=\"elementor-spacer\">\n\t\t\t<div class=\"elementor-spacer-inner\"><\/div>\n\t\t<\/div>\n\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<section class=\"elementor-section elementor-top-section elementor-element elementor-element-a2ec4c4 elementor-section-full_width elementor-section-height-default elementor-section-height-default\" data-id=\"a2ec4c4\" data-element_type=\"section\" data-e-type=\"section\" id=\"participate\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;}\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-50 elementor-top-column elementor-element elementor-element-c18de8c\" data-id=\"c18de8c\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap\">\n\t\t\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t<div class=\"elementor-column elementor-col-50 elementor-top-column elementor-element elementor-element-24b2fe8\" data-id=\"24b2fe8\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-55b2756 clamp_h2 elementor-widget elementor-widget-heading\" data-id=\"55b2756\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h2 class=\"elementor-heading-title elementor-size-default\">PARTICIPE EN EL RTG<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-1b6ac19 clamp_p elementor-widget elementor-widget-text-editor\" data-id=\"1b6ac19\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p class=\"\">Los datos se capturar\u00e1n al registro de una de las siguientes maneras:<\/p>\n<ol style=\"padding-inline-start: 20px; font-size: 1.1rem; margin-bottom: .5rem;\">\n<li><strong>Directamente a trav\u00e9s de los centros de tratamiento de hemofilia (CTH) participantes.<\/strong><\/li>\n<\/ol>\n<ul style=\"list-style-type: disc; margin-bottom: 1rem;\">\n<li>Se invitar\u00e1 a participar a todos los CTH que vayan a administrar terapia g\u00e9nica para PCH. Los CTH que vayan a ofrecer visitas de seguimiento a PCH que recibieron terapia g\u00e9nica ser\u00e1n invitados a participar o bien, los datos del paciente recolectados en el lugar donde se realice el seguimiento se enviar\u00e1n al CTH que administr\u00f3 la terapia g\u00e9nica para su inclusi\u00f3n en el registro.<\/li>\n<\/ul>\n<p style=\"margin: 0;\">Si su CTH estuviera interesado en participar en el RTG escriba a <a href=\"mailto:gtr@wfh.org\" target=\"_blank\" rel=\"noopener\">gtr@wfh.org<\/a>. La FMH le orientar\u00e1 sobre el proceso para obtener la aprobaci\u00f3n \u00e9tica de su instituci\u00f3n local.<\/p>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-d6d0681 elementor-widget__width-inherit elementor-tablet-align-start elementor-icon-list--layout-traditional elementor-list-item-link-full_width elementor-widget elementor-widget-icon-list\" data-id=\"d6d0681\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"icon-list.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<ul class=\"elementor-icon-list-items\">\n\t\t\t\t\t\t\t<li class=\"elementor-icon-list-item\">\n\t\t\t\t\t\t\t\t\t\t\t<a href=\"https:\/\/www.dropbox.com\/scl\/fo\/zcfkbkh41m4921p2pbgft\/h?rlkey=1j1sn5livayqamqg4tpmk9ex9&#038;st=9j3zmoit&#038;dl=0\" target=\"_blank\">\n\n\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-icon-list-icon\">\n\t\t\t\t\t\t\t<i aria-hidden=\"true\" class=\"fas fa-download\"><\/i>\t\t\t\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-icon-list-text\">Descargar documentos para solicitar la aprobaci\u00f3n \u00e9tica<\/span>\n\t\t\t\t\t\t\t\t\t\t\t<\/a>\n\t\t\t\t\t\t\t\t\t<\/li>\n\t\t\t\t\t\t<\/ul>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-da8dc00 clamp_p elementor-widget elementor-widget-text-editor\" data-id=\"da8dc00\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<ol style=\"font-size: 1.1rem; margin-bottom: .5rem; padding-inline-start: 20px;\" start=\"2\">\r\n \t<li><strong>Mediante transferencia\/enlace de datos de registros nacionales de hemofilia existentes que cumplan con criterios espec\u00edficos y puedan garantizar lo siguiente:<\/strong><\/li>\r\n<\/ol>\r\n<ul style=\"list-style-type: disc; margin-bottom: 1rem;\">\r\n \t<li>Recolecci\u00f3n de campos de datos iguales\/similares a los del conjunto de datos b\u00e1sicos del RTG de la FMH.<\/li>\r\n \t<li>Armonizaci\u00f3n y estandarizaci\u00f3n de terminolog\u00eda, particularmente en el caso de eventos adversos.<\/li>\r\n \t<li>Consentimiento del paciente para el uso secundario de sus datos, fuera del registro existente.<\/li>\r\n \t<li>Estrictas pr\u00e1cticas de gesti\u00f3n de la calidad de los datos y datos de alta calidad.<\/li>\r\n \t<li>Evitar la duplicaci\u00f3n de registros de PCH.<\/li>\r\n<\/ul>\r\n<p class=\"\">Si fuera usted una persona con hemofilia que ha recibido terapia g\u00e9nica y estuviera interesada en participar en el RTG agradeceremos se comunique con su CTH.<\/p>\r\n<p class=\"\">Puede obtener m\u00e1s informaci\u00f3n en la <a href=\"https:\/\/www1.wfh.org\/publications\/files\/pdf-2298.pdf\" target=\"_blank\" rel=\"noopener\">gu\u00eda del usuario sobre aspectos b\u00e1sicos de la terapia g\u00e9nica para la hemofilia y recolecci\u00f3n de datos a largo plazo<\/a>, as\u00ed como en la <a href=\"https:\/\/www1.wfh.org\/publications\/files\/pdf-2302.pdf\" target=\"_blank\" rel=\"noopener\">gu\u00eda del usuario para personas con hemofilia<\/a>.<\/p>\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<section class=\"elementor-section elementor-top-section elementor-element elementor-element-51dc1ab elementor-section-full_width elementor-section-height-default elementor-section-height-default\" data-id=\"51dc1ab\" data-element_type=\"section\" data-e-type=\"section\" id=\"governance\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;}\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-50 elementor-top-column elementor-element elementor-element-4cc1478\" data-id=\"4cc1478\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap\">\n\t\t\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t<div class=\"elementor-column elementor-col-50 elementor-top-column elementor-element elementor-element-07d2583\" data-id=\"07d2583\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-ac00ffc clamp_h2 elementor-widget elementor-widget-heading\" data-id=\"ac00ffc\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h2 class=\"elementor-heading-title elementor-size-default\">GOBERNANZA DEL RTG<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-47686dd clamp_p elementor-widget elementor-widget-text-editor\" data-id=\"47686dd\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p class=\"\">A fin de garantizar el \u00e9xito del RTG se estableci\u00f3 una estructura de gobernanza integral que abarca varios comit\u00e9s clave. La estructura de gobernanza incluye aportes del Consejo Asesor Cient\u00edfico (CAC), del Consorcio de Registros Nacionales y Centros de Tratamiento de Hemofilia, del comit\u00e9 directivo, del consorcio de la industria y del grupo asesor de pacientes. Representantes de varias organizaciones de pacientes y de profesionales de la salud, entre ellas la Sociedad Internacional sobre Trombosis y Hemostasia (ISTH), la Asociaci\u00f3n Europea para la Hemofilia y trastornos Afines (EAHAD), el Consorcio Europeo de Hemofilia (EHC), y la Fundaci\u00f3n Nacional sobre Trastornos Hemorr\u00e1gicos de EE. UU. (NBDF), forman parte de los diferentes comit\u00e9s.<\/p>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-1c95e3f elementor-icon-list--layout-inline elementor-list-item-link-full_width elementor-widget elementor-widget-icon-list\" data-id=\"1c95e3f\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"icon-list.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<ul class=\"elementor-icon-list-items elementor-inline-items\">\n\t\t\t\t\t\t\t<li class=\"elementor-icon-list-item elementor-inline-item\">\n\t\t\t\t\t\t\t\t\t\t\t<a href=\"\/wp-content\/uploads\/2024\/09\/WFH-GTR-Governance.pdf\" target=\"_blank\">\n\n\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-icon-list-icon\">\n\t\t\t\t\t\t\t<svg xmlns=\"http:\/\/www.w3.org\/2000\/svg\" width=\"40.918\" height=\"53.2\" viewBox=\"0 0 40.918 53.2\"><g id=\"Group_6750\" data-name=\"Group 6750\" transform=\"translate(1.5 6.5)\"><g id=\"Group_6757\" data-name=\"Group 6757\"><path id=\"Path_1011\" data-name=\"Path 1011\" d=\"M36.95,56.517a2.978,2.978,0,0,1-2.3-1.108,3.04,3.04,0,0,1-.085-4.176c.852-1.108,2.557-2.046,4.943-2.9a25.466,25.466,0,0,1,2.727-.767,34.887,34.887,0,0,0,1.7-3.58,34.071,34.071,0,0,0,1.278-3.409c-1.364-2.3-2.642-5.029-2.557-7.159a3.138,3.138,0,0,1,2.9-3.324h0a2.937,2.937,0,0,1,3.324,2.131c.682,2.045,0,5.2-.767,7.926A26.892,26.892,0,0,0,50.5,43.477c.767.938,1.449,1.79,2.216,2.642,2.983,0,5.8.256,7.5,1.193a3.021,3.021,0,0,1,1.7,3.665,3.061,3.061,0,0,1-3.58,2.3c-2.216-.256-4.773-2.386-6.733-4.432a43.074,43.074,0,0,0-4.432.426c-1.108.17-2.216.341-3.239.6a16.438,16.438,0,0,1-1.108,1.79,14.527,14.527,0,0,1-4.091,4.347A3.58,3.58,0,0,1,36.95,56.517Zm3.324-5.625a9.247,9.247,0,0,0-3.75,2.046c-.256.256-.256.426.085.852.17.17.256.341.938,0A11.343,11.343,0,0,0,40.274,50.892Zm15.171-1.96a6.868,6.868,0,0,0,3.239,1.875c.341.085.511.085.767-.511.085-.17.085-.256-.426-.6A10.735,10.735,0,0,0,55.444,48.932Zm-8.352-5.54c-.256.682-.511,1.278-.682,1.7-.256.682-.6,1.278-.852,1.875a6.579,6.579,0,0,1,1.278-.17c.852-.085,1.7-.256,2.557-.256-.426-.511-.767-.938-.938-1.193C48.115,44.841,47.6,44.159,47.092,43.392ZM45.9,32.738c-.341.085-.6.085-.6.767A8.949,8.949,0,0,0,46.325,37a8.659,8.659,0,0,0,.17-3.835c-.17-.426-.256-.426-.6-.426Z\" transform=\"translate(-28.311 -21.752)\" fill=\"#6f256f\"><\/path><path id=\"Path_1012\" data-name=\"Path 1012\" d=\"M1404.235,4242.746v50.2h37.918v-38.123l-12.877-12.077Z\" transform=\"translate(-1404.234 -4247.746)\" fill=\"none\" stroke=\"#6f256f\" stroke-width=\"3\"><\/path><path id=\"Path_1013\" data-name=\"Path 1013\" d=\"M1417.091,4242.746v12.292h13.44\" transform=\"translate(-1392.057 -4248.397)\" fill=\"none\" stroke=\"#6f256f\" stroke-width=\"3\"><\/path><\/g><\/g><\/svg>\t\t\t\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-icon-list-text\">Para obtener m\u00e1s informaci\u00f3n sobre la gobernanza del RTG<\/span>\n\t\t\t\t\t\t\t\t\t\t\t<\/a>\n\t\t\t\t\t\t\t\t\t<\/li>\n\t\t\t\t\t\t<\/ul>\n\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<section class=\"elementor-section elementor-top-section elementor-element elementor-element-2d0dd92 elementor-section-full_width elementor-section-height-default elementor-section-height-default\" data-id=\"2d0dd92\" data-element_type=\"section\" data-e-type=\"section\" id=\"data\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;}\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-50 elementor-top-column elementor-element elementor-element-1f5714d\" data-id=\"1f5714d\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap\">\n\t\t\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t<div class=\"elementor-column elementor-col-50 elementor-top-column elementor-element elementor-element-669e96a\" data-id=\"669e96a\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-7a37d00 clamp_h2 elementor-widget elementor-widget-heading\" data-id=\"7a37d00\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h2 class=\"elementor-heading-title elementor-size-default\">DATOS DEL RTG<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-fd3f6c8 clamp_p elementor-widget elementor-widget-text-editor\" data-id=\"fd3f6c8\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p class=\"\">El RTG de la FMH se est\u00e1 preparando en colaboraci\u00f3n con la Sociedad Internacional sobre Trombosis y Hemostasia (ISTH por su sigla en ingl\u00e9s), el Consorcio Europeo de Hemofilia (EHC por su sigla en ingl\u00e9s), la National Bleeding Disorders Foundation (NBDF), el Grupo de estudio sobre resultados de cargas y experiencias reportadas por los pacientes (PROBE por su sigla en ingl\u00e9s), y expertos en el campo de la terapia g\u00e9nica. El RTG de la FMH est\u00e1 gobernado por un Consejo Asesor Cient\u00edfico (CAC) que proporciona asesor\u00eda cient\u00edfica especializada sobre el GTR de la FMH, enfoc\u00e1ndose particularmente en la carta de datos, las pol\u00edticas de investigaci\u00f3n y las cuestiones cient\u00edficas. El CAC est\u00e1 compuesto por profesionales de la salud y personas con hemofilia.<\/p>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-5af8456 clamp_p elementor-widget elementor-widget-accordion\" data-id=\"5af8456\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"accordion.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<div class=\"elementor-accordion\">\n\t\t\t\t\t\t\t<div class=\"elementor-accordion-item\">\n\t\t\t\t\t<div id=\"elementor-tab-title-9531\" class=\"elementor-tab-title\" data-tab=\"1\" role=\"button\" aria-controls=\"elementor-tab-content-9531\" aria-expanded=\"false\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-accordion-icon elementor-accordion-icon-right\" aria-hidden=\"true\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-accordion-icon-closed\"><i class=\"fas fa-chevron-down\"><\/i><\/span>\n\t\t\t\t\t\t\t\t<span class=\"elementor-accordion-icon-opened\"><i class=\"fas fa-chevron-up\"><\/i><\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t<a class=\"elementor-accordion-title\" tabindex=\"0\">Protocolo y conjunto de datos b\u00e1sicos del RTG<\/a>\n\t\t\t\t\t<\/div>\n\t\t\t\t\t<div id=\"elementor-tab-content-9531\" class=\"elementor-tab-content elementor-clearfix\" data-tab=\"1\" role=\"region\" aria-labelledby=\"elementor-tab-title-9531\"><p class=\"\" style=\"margin-bottom: 0;\">La sinopsis del protocolo del RTG est\u00e1 disponible\u00a0<a href=\"https:\/\/wfh.org\/wp-content\/uploads\/2024\/03\/WFH-GTR-protocol-synopsis.pdf\" target=\"_blank\" rel=\"noopener\">aqu\u00ed<\/a>.<br class=\"\" \/>El conjunto de datos b\u00e1sicos del RTG se public\u00f3 en el <em>Journal of Thrombosis and Haemostasis<\/em> y est\u00e1 disponible <a href=\"https:\/\/onlinelibrary.wiley.com\/doi\/epdf\/10.1111\/jth.15023\" target=\"_blank\" rel=\"noreferrer noopener\">aqu\u00ed<\/a>.<\/p>\n<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t\t\t<div class=\"elementor-accordion-item\">\n\t\t\t\t\t<div id=\"elementor-tab-title-9532\" class=\"elementor-tab-title\" data-tab=\"2\" role=\"button\" aria-controls=\"elementor-tab-content-9532\" aria-expanded=\"false\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-accordion-icon elementor-accordion-icon-right\" aria-hidden=\"true\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-accordion-icon-closed\"><i class=\"fas fa-chevron-down\"><\/i><\/span>\n\t\t\t\t\t\t\t\t<span class=\"elementor-accordion-icon-opened\"><i class=\"fas fa-chevron-up\"><\/i><\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t<a class=\"elementor-accordion-title\" tabindex=\"0\">Protecci\u00f3n y privacidad de los datos<\/a>\n\t\t\t\t\t<\/div>\n\t\t\t\t\t<div id=\"elementor-tab-content-9532\" class=\"elementor-tab-content elementor-clearfix\" data-tab=\"2\" role=\"region\" aria-labelledby=\"elementor-tab-title-9532\"><p class=\"\">Nuestra base de datos se encuentra en un centro de datos seguro, con las salvaguardas f\u00edsicas, administrativas y t\u00e9cnicas adecuadas. Estos procedimientos est\u00e1n dise\u00f1ados para proteger la informaci\u00f3n contra uso inadecuado, acceso no autorizado, interferencia, alteraci\u00f3n, p\u00e9rdida y\/o divulgaci\u00f3n, y cumplen o superan los requisitos reglamentarios de privacidad y seguridad de Canad\u00e1, Estados Unidos y Europa. Las gu\u00edas sobre pol\u00edticas de datos cumplen con los reglamentos de privacidad de datos estadounidenses, canadienses y europeos. La FMH nombr\u00f3 a <a href=\"https:\/\/www.gdprep.org\/\" target=\"_blank\" rel=\"noopener\">GDPR Rep<\/a> como su representante en la Uni\u00f3n Europea y el Reino Unido para fungir como punto de contacto con las autoridades y con cualquier paciente inscrito al RTG de dichas regiones.<\/p>\n<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t\t\t<div class=\"elementor-accordion-item\">\n\t\t\t\t\t<div id=\"elementor-tab-title-9533\" class=\"elementor-tab-title\" data-tab=\"3\" role=\"button\" aria-controls=\"elementor-tab-content-9533\" aria-expanded=\"false\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-accordion-icon elementor-accordion-icon-right\" aria-hidden=\"true\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-accordion-icon-closed\"><i class=\"fas fa-chevron-down\"><\/i><\/span>\n\t\t\t\t\t\t\t\t<span class=\"elementor-accordion-icon-opened\"><i class=\"fas fa-chevron-up\"><\/i><\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t<a class=\"elementor-accordion-title\" tabindex=\"0\">Gobernanza de los datos<\/a>\n\t\t\t\t\t<\/div>\n\t\t\t\t\t<div id=\"elementor-tab-content-9533\" class=\"elementor-tab-content elementor-clearfix\" data-tab=\"3\" role=\"region\" aria-labelledby=\"elementor-tab-title-9533\"><p class=\"\">La gobernanza de los datos es vital a fin de garantizar la precisi\u00f3n, la consistencia y la seguridad de los datos recopilados y gestionados en el RTG. La gobernanza permite el uso eficiente de los datos y minimiza riesgos, al tiempo que garantiza que el RTG proporcione valiosa informaci\u00f3n para la investigaci\u00f3n, la formulaci\u00f3n de pol\u00edticas y la toma de decisiones cl\u00ednicas.<\/p>\n<p class=\"\">El CAC del RTG ha establecido un conjunto integral de procedimientos operativos estandarizados (POE) para regular el uso de los datos del RTG, el cual abarca temas como los siguientes:<\/p>\n<ul style=\"margin-bottom: 1rem;\">\n<li>Acceso a los datos, derechos y solicitudes de acceso<\/li>\n<li>Comunicaciones, informes y publicaciones<\/li>\n<li>Recolecci\u00f3n y procesamiento de informaci\u00f3n de seguridad<\/li>\n<li>Interpretaci\u00f3n, evaluaci\u00f3n y comunicaci\u00f3n de datos de seguridad<\/li>\n<li>Calidad de los datos<\/li>\n<\/ul>\n<p class=\"\">Estos POE garantizan la gesti\u00f3n \u00e9tica, segura y eficaz de los datos, apoyando la misi\u00f3n del RTG de valorar la seguridad, eficacia y durabilidad a largo plazo de la terapia g\u00e9nica para la hemofilia.<\/p>\n<p class=\"\">Si desea m\u00e1s informaci\u00f3n sobre los POE escriba a <a href=\"mailto:gtr@wfh.org\">gtr@wfh.org<\/a>.<\/p>\n<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t<\/div>\n\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<section class=\"elementor-section elementor-top-section elementor-element elementor-element-b951722 elementor-section-full_width elementor-section-height-default elementor-section-height-default\" data-id=\"b951722\" data-element_type=\"section\" data-e-type=\"section\" id=\"programs\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;}\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-50 elementor-top-column elementor-element elementor-element-20ee21f\" data-id=\"20ee21f\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap\">\n\t\t\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t<div class=\"elementor-column elementor-col-50 elementor-top-column elementor-element elementor-element-d341629\" data-id=\"d341629\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-839b46e clamp_h2 elementor-widget elementor-widget-heading\" data-id=\"839b46e\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h2 class=\"elementor-heading-title elementor-size-default\">PROGRAMAS DEL RTG<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<section class=\"elementor-section elementor-inner-section elementor-element elementor-element-4a0c635 elementor-section-full_width elementor-section-height-default elementor-section-height-default\" data-id=\"4a0c635\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-50 elementor-inner-column elementor-element elementor-element-2cdbd40\" data-id=\"2cdbd40\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-3c5c40b elementor-widget elementor-widget-image\" data-id=\"3c5c40b\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"image.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<img fetchpriority=\"high\" decoding=\"async\" width=\"1200\" height=\"700\" src=\"https:\/\/wfh.org\/wp-content\/uploads\/2022\/01\/DAta-collection-WBDR-Updates-widget-HTC-funding-program-card.png\" class=\"attachment-full size-full wp-image-19003\" alt=\"Hombre con un estetoscopio alrededor del cuello habla con un paciente sentado del otro lado del escritorio.\" srcset=\"https:\/\/wfh.org\/wp-content\/uploads\/2022\/01\/DAta-collection-WBDR-Updates-widget-HTC-funding-program-card.png 1200w, https:\/\/wfh.org\/wp-content\/uploads\/2022\/01\/DAta-collection-WBDR-Updates-widget-HTC-funding-program-card-300x175.png 300w, https:\/\/wfh.org\/wp-content\/uploads\/2022\/01\/DAta-collection-WBDR-Updates-widget-HTC-funding-program-card-768x448.png 768w\" sizes=\"(max-width: 1200px) 100vw, 1200px\" \/>\t\t\t\t\t\t\t\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<div class=\"elementor-column elementor-col-50 elementor-inner-column elementor-element elementor-element-39abc83\" data-id=\"39abc83\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-062a62b elementor-widget elementor-widget-heading\" data-id=\"062a62b\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h3 class=\"elementor-heading-title elementor-size-default\">Programa de calidad de los datos<\/h3>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-d4772b0 clamp_p elementor-widget elementor-widget-text-editor\" data-id=\"d4772b0\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p class=\"\">El RTG cuenta con un programa integral de aseguramiento de la calidad de los datos (ACD), el cual se aplica a todos los datos ingresados al registro. El Programa de ACD se basa en las mejores pr\u00e1cticas en su campo, entre ellas las del <a href=\"https:\/\/www.ema.europa.eu\/system\/files\/documents\/regulatory-procedural-guideline\/data-quality-framework-eu-medicines-regulation_en_1.pdf\" target=\"_blank\" rel=\"noreferrer noopener\">Marco de referencia para la calidad de los datos de la Agencia Europa de Medicamentos<\/a>. Se eval\u00faan las siguientes dimensiones de calidad de todos los datos:<\/p>\r\n\r\n<ul style=\"margin-bottom: 1em;\">\r\n \t<li>Confiabilidad<\/li>\r\n \t<li>Amplitud<\/li>\r\n \t<li>Coherencia<\/li>\r\n \t<li>Oportunidad<\/li>\r\n \t<li>Relevancia<\/li>\r\n<\/ul>\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\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-5645ed6 elementor-section-full_width elementor-section-height-default elementor-section-height-default\" data-id=\"5645ed6\" data-element_type=\"section\" data-e-type=\"section\" id=\"myGTR\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;}\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-50 elementor-top-column elementor-element elementor-element-6501ccb\" data-id=\"6501ccb\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap\">\n\t\t\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t<div class=\"elementor-column elementor-col-50 elementor-top-column elementor-element elementor-element-3fa3fa1\" data-id=\"3fa3fa1\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-b1e347d clamp_h2 elementor-widget elementor-widget-heading\" data-id=\"b1e347d\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h2 class=\"elementor-heading-title elementor-size-default\">myGTR<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-d3cabcb elementor-widget elementor-widget-text-editor\" data-id=\"d3cabcb\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p class=\"clamp_p\">myGTR es una herramienta de participaci\u00f3n del paciente del Registro de Terapia G\u00e9nica (GTR por su sigla en ingl\u00e9s) de la FMH. myGTR est\u00e1 dise\u00f1ado para recopilar datos de resultados reportados por pacientes mediante un asistente digital automatizado. Los pacientes recibir\u00e1n alertas a trav\u00e9s de su medio de contacto preferido, ya sean correos electr\u00f3nicos o mensajes de texto, para ingresar a myGTR. myGTR es una aplicaci\u00f3n basada en internet y no est\u00e1 disponible en ninguna tienda de aplicaciones.<\/p>\n<p class=\"clamp_p\">myGTR permitir\u00e1 a los pacientes continuar proporcionando, f\u00e1cilmente, datos sobre su estado de salud y su calidad de vida relacionada con la salud (HR-QOL por su sigla en ingl\u00e9s). A intervalos peri\u00f3dicos (4 veces durante el primer a\u00f1o posterior a la infusi\u00f3n y 2 veces por a\u00f1o despu\u00e9s de esto), se pedir\u00e1 al paciente que responda unas cuantas sencillas preguntas relacionadas con sus hemorragias y tratamiento y, de manera rotativa, dos o tres diferentes cuestionarios sobre HR-QOL (v\u00e9ase la secci\u00f3n <em>Diagrama: Cadencia de cuestionario<\/em> <em>myGTR<\/em>).<\/p>\n<p style=\"margin-bottom: .5em; color: #1f3f78;\"><strong>Los cuestionarios sobre HR-QOL abarcan lo siguiente:<\/strong><\/p>\n<ol class=\"clamp_p\">\n<li>PROBE (Resultados, Cargas y Experiencias Reportadas por Pacientes, por su sigla en ingl\u00e9s): Cuestionario que recopila informaci\u00f3n sobre calidad de vida y otras \u00e1reas importantes para la salud.<\/li>\n<li>coreHEM MHO (Perspectiva de Salud Mental coreHEM por su sigla en ingl\u00e9s): Instrumento para valorar la perspectiva de salud mental de una persona con hemofilia que ha recibido terapia g\u00e9nica.<\/li>\n<li>EQ-5D-5L (EuroQol 5 Dimensiones 5 Niveles): Herramienta breve usada para medir la calidad de vida con cinco preguntas sobre movilidad, autocuidados, actividades habituales, dolor\/incomodidad y ansiedad\/depresi\u00f3n.<\/li>\n<\/ol>\n<p class=\"clamp_p\" style=\"margin-top: 1em;\">Los datos de myGTR complementar\u00e1n los datos cl\u00ednicos recopilados por m\u00e9dicos a trav\u00e9s del GTR de la FMH. Todos los datos ingresados a myGTR se almacenar\u00e1n en la base de datos del GTR de la FMH.<\/p>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-abe8c82 elementor-widget elementor-widget-heading\" data-id=\"abe8c82\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h3 class=\"elementor-heading-title elementor-size-default\">Diagrama: Cadencia de cuestionario myGTR<\/h3>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-aed74f0 elementor-widget elementor-widget-image\" data-id=\"aed74f0\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"image.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t\t\t\t<figure class=\"wp-caption\">\n\t\t\t\t\t\t\t\t\t\t<img decoding=\"async\" width=\"1479\" height=\"212\" src=\"https:\/\/wfh.org\/wp-content\/uploads\/2024\/04\/mygtr-visual-ES.png\" class=\"attachment-full size-full wp-image-104493\" alt=\"Diagrama de flujo de la cadencia del cuestionario de myGTR\" srcset=\"https:\/\/wfh.org\/wp-content\/uploads\/2024\/04\/mygtr-visual-ES.png 1479w, https:\/\/wfh.org\/wp-content\/uploads\/2024\/04\/mygtr-visual-ES-192x28.png 192w, https:\/\/wfh.org\/wp-content\/uploads\/2024\/04\/mygtr-visual-ES-768x110.png 768w\" sizes=\"(max-width: 1479px) 100vw, 1479px\" \/>\t\t\t\t\t\t\t\t\t\t\t<figcaption class=\"widget-image-caption wp-caption-text\">Frecuencia: A\u00f1o 1 = notificaciones cada tres meses (correo electr\u00f3nico o mensaje de texto). A\u00f1o 2 en adelante = cada 6 meses.<\/figcaption>\n\t\t\t\t\t\t\t\t\t\t<\/figure>\n\t\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<section class=\"elementor-section elementor-top-section elementor-element elementor-element-47316fa elementor-section-full_width elementor-section-height-default elementor-section-height-default\" data-id=\"47316fa\" data-element_type=\"section\" data-e-type=\"section\" id=\"support\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;}\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-50 elementor-top-column elementor-element elementor-element-2d0c8eb\" data-id=\"2d0c8eb\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap\">\n\t\t\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t<div class=\"elementor-column elementor-col-50 elementor-top-column elementor-element elementor-element-8a5fffc\" data-id=\"8a5fffc\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-08e59f5 clamp_h2 elementor-widget elementor-widget-heading\" data-id=\"08e59f5\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h2 class=\"elementor-heading-title elementor-size-default\">APOYO PARA LA COMUNIDAD DEL RTG<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-c208953 clamp_p elementor-widget elementor-widget-text-editor\" data-id=\"c208953\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p class=\"\">Para obtener m\u00e1s informaci\u00f3n sobre c\u00f3mo participar en el RTG se invita a PCH y CTH a consultar las gu\u00edas del usuario que aparecen abajo:<\/p>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-63c14b3 elementor-widget elementor-widget-heading\" data-id=\"63c14b3\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h3 class=\"elementor-heading-title elementor-size-default\">Gu\u00edas de usuario<\/h3>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<section class=\"elementor-section elementor-inner-section elementor-element elementor-element-067c231 elementor-section-full_width elementor-section-height-default elementor-section-height-default\" data-id=\"067c231\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-extended\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-33 elementor-inner-column elementor-element elementor-element-051cc30\" data-id=\"051cc30\" data-element_type=\"column\" data-e-type=\"column\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;}\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-aa8e675 elementor-widget elementor-widget-image\" data-id=\"aa8e675\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"image.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<img decoding=\"async\" width=\"1200\" height=\"675\" src=\"https:\/\/wfh.org\/wp-content\/uploads\/2023\/02\/2298-img.png\" class=\"attachment-full size-full wp-image-59315\" alt=\"\" srcset=\"https:\/\/wfh.org\/wp-content\/uploads\/2023\/02\/2298-img.png 1200w, https:\/\/wfh.org\/wp-content\/uploads\/2023\/02\/2298-img-192x108.png 192w, https:\/\/wfh.org\/wp-content\/uploads\/2023\/02\/2298-img-768x432.png 768w\" sizes=\"(max-width: 1200px) 100vw, 1200px\" \/>\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-2359891 elementor-widget elementor-widget-heading\" data-id=\"2359891\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h3 class=\"elementor-heading-title elementor-size-default\">Gu\u00eda del usuario<\/h3>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-48e14d8 elementor-widget elementor-widget-spacer\" data-id=\"48e14d8\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"spacer.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<div class=\"elementor-spacer\">\n\t\t\t<div class=\"elementor-spacer-inner\"><\/div>\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-6c69d00 clamp_p elementor-widget elementor-widget-text-editor\" data-id=\"6c69d00\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p class=\"\">Fundamentos de la hemofilia, terapia g\u00e9nica y recogida de datos a largo plazo<\/p>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-a7e7c70 elementor-widget elementor-widget-button\" data-id=\"a7e7c70\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"button.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<div class=\"elementor-button-wrapper\">\n\t\t\t\t\t<a class=\"elementor-button elementor-button-link elementor-size-sm\" href=\"https:\/\/elearning.wfh.org\/es\/resource\/registro-de-terapia-genica-de-la-fmh-fundamentos-de-la-hemofilia-terapia-genica-y-recogida-de-datos-a-largo-plazo\/\" target=\"_blank\">\n\t\t\t\t\t\t<span class=\"elementor-button-content-wrapper\">\n\t\t\t\t\t\t<span class=\"elementor-button-icon\">\n\t\t\t\t<i aria-hidden=\"true\" class=\"fas fa-chevron-right\"><\/i>\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\t<span class=\"elementor-button-text\">Ver en l\u00ednea<\/span>\n\t\t\t\t\t<\/span>\n\t\t\t\t\t<\/a>\n\t\t\t\t<\/div>\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<div class=\"elementor-column elementor-col-33 elementor-inner-column elementor-element elementor-element-f89d1a6\" data-id=\"f89d1a6\" data-element_type=\"column\" data-e-type=\"column\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;}\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-d6ee491 elementor-widget elementor-widget-image\" data-id=\"d6ee491\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"image.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<img loading=\"lazy\" decoding=\"async\" width=\"1200\" height=\"675\" src=\"https:\/\/wfh.org\/wp-content\/uploads\/2023\/02\/2300-img.png\" class=\"attachment-full size-full wp-image-59320\" alt=\"\" srcset=\"https:\/\/wfh.org\/wp-content\/uploads\/2023\/02\/2300-img.png 1200w, https:\/\/wfh.org\/wp-content\/uploads\/2023\/02\/2300-img-192x108.png 192w, https:\/\/wfh.org\/wp-content\/uploads\/2023\/02\/2300-img-768x432.png 768w\" sizes=\"(max-width: 1200px) 100vw, 1200px\" \/>\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-1981006 elementor-widget elementor-widget-heading\" data-id=\"1981006\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h3 class=\"elementor-heading-title elementor-size-default\">Gu\u00eda del usuario<\/h3>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-fb69c26 elementor-widget elementor-widget-spacer\" data-id=\"fb69c26\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"spacer.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<div class=\"elementor-spacer\">\n\t\t\t<div class=\"elementor-spacer-inner\"><\/div>\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-966f30e clamp_p elementor-widget elementor-widget-text-editor\" data-id=\"966f30e\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p class=\"\">Centros de tratamiento de la hemofilia<\/p>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-0fa2c4c elementor-widget elementor-widget-button\" data-id=\"0fa2c4c\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"button.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<div class=\"elementor-button-wrapper\">\n\t\t\t\t\t<a class=\"elementor-button elementor-button-link elementor-size-sm\" href=\"https:\/\/elearning.wfh.org\/es\/resource\/registro-de-terapia-genica-de-la-fmh-guia-del-usuario-para-los-centros-de-tratamiento-de-la-hemofilia\/\" target=\"_blank\">\n\t\t\t\t\t\t<span class=\"elementor-button-content-wrapper\">\n\t\t\t\t\t\t<span class=\"elementor-button-icon\">\n\t\t\t\t<i aria-hidden=\"true\" class=\"fas fa-chevron-right\"><\/i>\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\t<span class=\"elementor-button-text\">Ver en l\u00ednea<\/span>\n\t\t\t\t\t<\/span>\n\t\t\t\t\t<\/a>\n\t\t\t\t<\/div>\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<div class=\"elementor-column elementor-col-33 elementor-inner-column elementor-element elementor-element-3c31d14\" data-id=\"3c31d14\" data-element_type=\"column\" data-e-type=\"column\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;}\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-b47d8d0 elementor-widget elementor-widget-image\" data-id=\"b47d8d0\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"image.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<img loading=\"lazy\" decoding=\"async\" width=\"1200\" height=\"675\" src=\"https:\/\/wfh.org\/wp-content\/uploads\/2023\/02\/2302-img.png\" class=\"attachment-full size-full wp-image-59325\" alt=\"\" srcset=\"https:\/\/wfh.org\/wp-content\/uploads\/2023\/02\/2302-img.png 1200w, https:\/\/wfh.org\/wp-content\/uploads\/2023\/02\/2302-img-192x108.png 192w, https:\/\/wfh.org\/wp-content\/uploads\/2023\/02\/2302-img-768x432.png 768w\" sizes=\"(max-width: 1200px) 100vw, 1200px\" \/>\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-fb4e52e elementor-widget elementor-widget-heading\" data-id=\"fb4e52e\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h3 class=\"elementor-heading-title elementor-size-default\">Gu\u00eda del usuario<\/h3>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-6f86ea4 elementor-widget elementor-widget-spacer\" data-id=\"6f86ea4\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"spacer.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<div class=\"elementor-spacer\">\n\t\t\t<div class=\"elementor-spacer-inner\"><\/div>\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-113e810 clamp_p elementor-widget elementor-widget-text-editor\" data-id=\"113e810\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p class=\"\">Personas con hemofilia<\/p>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-d559215 elementor-widget elementor-widget-button\" data-id=\"d559215\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"button.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<div class=\"elementor-button-wrapper\">\n\t\t\t\t\t<a class=\"elementor-button elementor-button-link elementor-size-sm\" href=\"https:\/\/elearning.wfh.org\/es\/resource\/registro-de-terapia-genica-de-la-fmh-guia-del-usuario-para-personas-con-hemofilia\/\" target=\"_blank\">\n\t\t\t\t\t\t<span class=\"elementor-button-content-wrapper\">\n\t\t\t\t\t\t<span class=\"elementor-button-icon\">\n\t\t\t\t<i aria-hidden=\"true\" class=\"fas fa-chevron-right\"><\/i>\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\t<span class=\"elementor-button-text\">Ver en l\u00ednea<\/span>\n\t\t\t\t\t<\/span>\n\t\t\t\t\t<\/a>\n\t\t\t\t<\/div>\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 class=\"elementor-element elementor-element-ef7b188 elementor-widget elementor-widget-text-editor\" data-id=\"ef7b188\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p>Para obtener m\u00e1s informaci\u00f3n sobre terapia g\u00e9nica visite el <a href=\"https:\/\/elearning.wfh.org\/es\/centros-de-aprendizaje\/terapia-genica\/\" target=\"_blank\" rel=\"noopener\">Centro de aprendizaje electr\u00f3nico de la FMH sobre terapia g\u00e9nica<\/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<section class=\"elementor-section elementor-top-section elementor-element elementor-element-5eb2b1e elementor-section-full_width elementor-section-height-default elementor-section-height-default\" data-id=\"5eb2b1e\" data-element_type=\"section\" data-e-type=\"section\" id=\"publications\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;}\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-50 elementor-top-column elementor-element elementor-element-0f51782\" data-id=\"0f51782\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap\">\n\t\t\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t<div class=\"elementor-column elementor-col-50 elementor-top-column elementor-element elementor-element-be3ba1d\" data-id=\"be3ba1d\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-91988c4 clamp_h2 elementor-widget elementor-widget-heading\" data-id=\"91988c4\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h2 class=\"elementor-heading-title elementor-size-default\">PUBLICACIONES<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-4d817cc clamp_p elementor-widget elementor-widget-text-editor\" data-id=\"4d817cc\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p class=\"\">Aqu\u00ed encontrar\u00e1 publicaciones relacionadas con el RTG:<\/p>\r\n\r\n<ul>\r\n \t<li>Konkle, B. A., Coffin, D., Pierce, G. F., Clark, C., George, L., Iorio, A., Mahlangu, J., Naccache, M., O\u2019Mahony, B., Peyvandi, F., Pipe, S., Quartel, A., Sawyer, E. K., Skinner, M. W., Tortella, B., Watson, C., Winburn, I., &amp; Members of the WFH Gene Therapy Registry Steering Committee. (2020). World Federation of Hemophilia Gene Therapy Registry.\u00a0<em>Haemophilia, 26<\/em>(4), 555-741, e151-e222.\u00a0<a href=\"https:\/\/doi.org\/10.1111\/hae.14015\" target=\"_blank\" rel=\"noopener\">https:\/\/doi.org\/10.1111\/hae.14015<\/a><\/li>\r\n \t<li>Konkle, B., Pierce, G., Coffin, D., Naccache, M., Clark, R. C., George, L., Iorio, A., O&#8217;Mahony, B., Pipe, S., Skinner, M., Watson, C., Peyvandi, F., Mahlangu, J., for the ISTH Subcommittee on Factor VIII, Factor IX, Rare Bleeding Disorders. (2020). Core data set on safety, efficacy, and durability of hemophilia gene therapy for a global registry: Communication from the SSC of the ISTH.\u00a0<em>Journal of Thrombosis and Haemostasis, 18<\/em>(11), 2-3128. <a href=\"https:\/\/doi.org\/10.1111\/jth.15023\" target=\"_blank\" rel=\"noopener\">https:\/\/doi.org\/10.1111\/jth.15023<\/a><\/li>\r\n \t<li>Konkle, B. A., Peyvandi, F., Coffin, D., Naccache, M., Youttananukorn, T., Pierce, G. F., &amp; the WFH Gene Therapy Registry Scientific Advisory Board. (2024). Landmark endorsement of a global registry: The European Medicines Agency (EMA) Committee for Medicinal Products for Human Use (CHMP), publicly endorses World Federation of Hemophilia Gene Therapy Registry as global standard.\u00a0<em>Haemophilia, 30<\/em>(1), 1-252. <a href=\"https:\/\/doi.org\/10.1111\/hae.14912\" target=\"_blank\" rel=\"noopener\">https:\/\/doi.org\/10.1111\/hae.14912<\/a><\/li>\r\n \t<li>Miesbach, W., Konkle, B., Chowdary, P., Kaczmarek, R., Leebeek, F., Mahlangu, J., Makris, M., Pipe, S. W., Srivastava, A., Voorberg, J., Pierce, G. F., &amp; Peyvandi, F. (2024).<br class=\"\" \/>Recommendations for a minimum data set for monitoring gene therapy in hemophilia: Communication from the ISTH SSC Working Group on Gene Therapy. <em>Journal of Thrombosis and Haemostasis, 22<\/em>(5), 1510-1515. <a href=\"https:\/\/doi.org\/10.1016\/j.jtha.2023.12.039\" target=\"_blank\" rel=\"noopener\">https:\/\/doi.org\/10.1016\/j.jtha.2023.12.039<\/a><\/li>\r\n<\/ul>\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<section class=\"elementor-section elementor-top-section elementor-element elementor-element-9de093f elementor-section-full_width elementor-section-height-default elementor-section-height-default\" data-id=\"9de093f\" data-element_type=\"section\" data-e-type=\"section\" id=\"contact-us\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;}\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-50 elementor-top-column elementor-element elementor-element-8f5914d\" data-id=\"8f5914d\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap\">\n\t\t\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t<div class=\"elementor-column elementor-col-50 elementor-top-column elementor-element elementor-element-7782f0c\" data-id=\"7782f0c\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-9ad61cc clamp_h2 elementor-widget elementor-widget-heading\" data-id=\"9ad61cc\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h2 class=\"elementor-heading-title elementor-size-default\">CONT\u00c1CTENOS<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-2957838 clamp_p elementor-widget elementor-widget-text-editor\" data-id=\"2957838\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p class=\"\">Comun\u00edquese con el equipo del RTG a <a href=\"mailto:gtr@wfh.org\">gtr@wfh.org<\/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<section class=\"elementor-section elementor-top-section elementor-element elementor-element-e8d487b elementor-section-full_width elementor-section-height-default elementor-section-height-default\" data-id=\"e8d487b\" data-element_type=\"section\" data-e-type=\"section\" id=\"acknowledgement\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;}\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-50 elementor-top-column elementor-element elementor-element-7fae391\" data-id=\"7fae391\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap\">\n\t\t\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t<div class=\"elementor-column elementor-col-50 elementor-top-column elementor-element elementor-element-aa3fec7\" data-id=\"aa3fec7\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-6281bd6 clamp_h2 elementor-widget elementor-widget-heading\" data-id=\"6281bd6\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h2 class=\"elementor-heading-title elementor-size-default\">AGRADECIMIENTO<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-2681604 elementor-widget elementor-widget-spacer\" data-id=\"2681604\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"spacer.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<div class=\"elementor-spacer\">\n\t\t\t<div class=\"elementor-spacer-inner\"><\/div>\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-64faef3 elementor-widget elementor-widget-heading\" data-id=\"64faef3\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h3 class=\"elementor-heading-title elementor-size-default\">EL RTG RECIBE APOYO FINANCIERO DE:<\/h3>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-d278feb elementor-widget elementor-widget-text-editor\" data-id=\"d278feb\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p>\t\t<div data-elementor-type=\"section\" data-elementor-id=\"33307\" class=\"elementor elementor-33307 elementor-32852 elementor-32852\" data-elementor-post-type=\"elementor_library\">\n\t\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-3aff1d1f elementor-section-full_width elementor-section-height-default elementor-section-height-default\" data-id=\"3aff1d1f\" data-element_type=\"section\" data-e-type=\"section\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;}\">\n\t\t\t\t\t\t\t<div class=\"elementor-background-overlay\"><\/div>\n\t\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-fa77b88\" data-id=\"fa77b88\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-7ddbf341 elementor-widget elementor-widget-heading\" data-id=\"7ddbf341\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h5 class=\"elementor-heading-title elementor-size-default\">ALIADOS VISIONARIOS FUNDADORES<\/h5>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-52cd40ab elementor-widget-divider--view-line elementor-widget elementor-widget-divider\" data-id=\"52cd40ab\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"divider.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<div class=\"elementor-divider\">\n\t\t\t<span class=\"elementor-divider-separator\">\n\t\t\t\t\t\t<\/span>\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-e6314a3 gallery-spacing-custom elementor-widget elementor-widget-image-gallery\" data-id=\"e6314a3\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"image-gallery.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<div class=\"elementor-image-gallery\">\n\t\t\t<div id='gallery-1' class='gallery galleryid-56742 gallery-columns-2 gallery-size-full'><figure class='gallery-item'>\n\t\t\t<div class='gallery-icon landscape'>\n\t\t\t\t<img loading=\"lazy\" decoding=\"async\" width=\"770\" height=\"350\" src=\"https:\/\/wfh.org\/wp-content\/uploads\/2022\/03\/biomarin-transparent.png\" class=\"attachment-full size-full\" alt=\"Logo de Biomarin\" srcset=\"https:\/\/wfh.org\/wp-content\/uploads\/2022\/03\/biomarin-transparent.png 770w, https:\/\/wfh.org\/wp-content\/uploads\/2022\/03\/biomarin-transparent-192x87.png 192w, https:\/\/wfh.org\/wp-content\/uploads\/2022\/03\/biomarin-transparent-768x349.png 768w\" sizes=\"(max-width: 770px) 100vw, 770px\" 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class='gallery-item'>\n\t\t\t<div class='gallery-icon landscape'>\n\t\t\t\t<img loading=\"lazy\" decoding=\"async\" width=\"770\" height=\"350\" src=\"https:\/\/wfh.org\/wp-content\/uploads\/2022\/03\/spark-transparent.png\" class=\"attachment-full size-full\" alt=\"Logo de Spark Therapeutics\" srcset=\"https:\/\/wfh.org\/wp-content\/uploads\/2022\/03\/spark-transparent.png 770w, https:\/\/wfh.org\/wp-content\/uploads\/2022\/03\/spark-transparent-192x87.png 192w, https:\/\/wfh.org\/wp-content\/uploads\/2022\/03\/spark-transparent-768x349.png 768w\" sizes=\"(max-width: 770px) 100vw, 770px\" \/>\n\t\t\t<\/div><\/figure>\n\t\t<\/div>\n\t\t<\/div>\n\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<\/p>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-a37ee60 elementor-widget elementor-widget-heading\" data-id=\"a37ee60\" data-element_type=\"widget\" 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