{"id":76272,"date":"2023-06-26T10:06:32","date_gmt":"2023-06-26T14:06:32","guid":{"rendered":"https:\/\/wfh.org\/article\/publication-du-rapport-2022-du-rmtc\/"},"modified":"2023-07-11T08:48:09","modified_gmt":"2023-07-11T12:48:09","slug":"publication-du-rapport-2022-du-rmtc","status":"publish","type":"post","link":"https:\/\/wfh.org\/fr\/article\/publication-du-rapport-2022-du-rmtc\/","title":{"rendered":"Publication du Rapport 2022 du RMTC"},"content":{"rendered":"\t\t<div data-elementor-type=\"wp-post\" data-elementor-id=\"76272\" class=\"elementor elementor-76272 elementor-75293\" data-elementor-post-type=\"post\">\n\t\t\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-e18c977 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"e18c977\" data-element_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-a583c6e\" data-id=\"a583c6e\" data-element_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-6459de6 elementor-widget elementor-widget-text-editor\" data-id=\"6459de6\" data-element_type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t<style>\/*! elementor - v3.23.0 - 25-07-2024 *\/\n.elementor-widget-text-editor.elementor-drop-cap-view-stacked .elementor-drop-cap{background-color:#69727d;color:#fff}.elementor-widget-text-editor.elementor-drop-cap-view-framed .elementor-drop-cap{color:#69727d;border:3px solid;background-color:transparent}.elementor-widget-text-editor:not(.elementor-drop-cap-view-default) .elementor-drop-cap{margin-top:8px}.elementor-widget-text-editor:not(.elementor-drop-cap-view-default) .elementor-drop-cap-letter{width:1em;height:1em}.elementor-widget-text-editor .elementor-drop-cap{float:left;text-align:center;line-height:1;font-size:50px}.elementor-widget-text-editor .elementor-drop-cap-letter{display:inline-block}<\/style>\t\t\t\t<p>Le <a href=\"https:\/\/wfh.org\/fr\/recherche-et-collecte-de-donnees\/#wbdr\" target=\"_blank\" rel=\"noopener\">Registre mondial des troubles de la coagulation<\/a> reste le seul registre mondial pour les personnes atteintes d&#8217;h\u00e9mophilie et il continue \u00e0 soutenir la recherche et les initiatives de plaidoyer \u00e0 l&#8217;\u00e9chelle mondiale. Les donn\u00e9es normalis\u00e9es recueillies ont \u00e9t\u00e9 utilis\u00e9es pour prendre des d\u00e9cisions fond\u00e9es sur des preuves, pour aider \u00e0 comprendre la nature des disparit\u00e9s dans la prise en charge et pour am\u00e9liorer le traitement de l&#8217;h\u00e9mophilie. Cette ann\u00e9e, nous continuons \u00e0 observer des disparit\u00e9s r\u00e9gionales et \u00e9conomiques en mati\u00e8re de diagnostic et de traitement. Il existe un \u00e9cart important entre l&#8217;\u00e2ge m\u00e9dian au moment du diagnostic pour les patients graves dans les pays \u00e0 revenu \u00e9lev\u00e9 et ceux des pays \u00e0 faible revenu. Les donn\u00e9es du Rapport montrent que seuls 30\u00a0% des adultes et 32\u00a0% des enfants atteints d&#8217;h\u00e9mophilie s\u00e9v\u00e8re ont re\u00e7u une prophylaxie en 2022\u00a0; ces chiffres sont encore plus bas pour les patients des pays \u00e0 revenus faibles et moyens inf\u00e9rieurs. Les donn\u00e9es montrent \u00e9galement que 20\u00a0% des adultes atteints d&#8217;h\u00e9mophilie s\u00e9v\u00e8re d\u00e9clarent que le diagnostic de leur maladie a une incidence n\u00e9gative sur leur situation professionnelle. Ces donn\u00e9es concr\u00e8tes peuvent \u00eatre utilis\u00e9es pour \u00e9clairer le traitement de l&#8217;h\u00e9mophilie et l&#8217;\u00e9laboration de politiques visant \u00e0 garantir un Traitement \u00e9quitable pour tous.<\/p>\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-2e7d247 elementor-widget elementor-widget-image\" data-id=\"2e7d247\" data-element_type=\"widget\" data-widget_type=\"image.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t<style>\/*! elementor - v3.23.0 - 25-07-2024 *\/\n.elementor-widget-image{text-align:center}.elementor-widget-image a{display:inline-block}.elementor-widget-image a img[src$=\".svg\"]{width:48px}.elementor-widget-image img{vertical-align:middle;display:inline-block}<\/style>\t\t\t\t\t\t\t\t\t\t\t<a href=\"https:\/\/elearning.wfh.org\/resource\/wbdr-2022-data-report\/\" target=\"_blank\">\n\t\t\t\t\t\t\t<img decoding=\"async\" src=\"https:\/\/wfh.org\/wp-content\/uploads\/elementor\/thumbs\/WBDR-thumbnail-q8j93kf4xdhc52m7mr0s3vu7ooj3fud4t9op18li6o.jpg\" title=\"WBDR-thumbnail\" alt=\"WBDR-thumbnail\" loading=\"lazy\" \/>\t\t\t\t\t\t\t\t<\/a>\n\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-fbfa1b4 elementor-widget elementor-widget-text-editor\" data-id=\"fbfa1b4\" data-element_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<p>Le Registre mondial des troubles de la coagulation continue de se d\u00e9velopper et, en 2022, la plateforme a \u00e9t\u00e9 <a href=\"https:\/\/wfh.org\/fr\/article\/le-saviez-vous-la-plateforme-du-rmtc-est-desormais-multilingue\/\" target=\"_blank\" rel=\"noopener\">traduite en fran\u00e7ais, en espagnol et en russe<\/a> afin d&#8217;accro\u00eetre sa facilit\u00e9 d&#8217;utilisation \u00e0 l&#8217;\u00e9chelle mondiale. L&#8217;ann\u00e9e derni\u00e8re a \u00e9galement vu le lancement de <a href=\"https:\/\/wfh.org\/fr\/article\/introducing-the-mywbdr-mobile-app-a-new-wbdr-data-collection-tool\/\" target=\"_blank\" rel=\"noopener\">l&#8217;application mobile myWBDR<\/a>, qui permet aux patients de suivre leur prise en charge, en tra\u00e7ant saignements et traitements, ainsi que leur qualit\u00e9 de vie et le fardeau de la maladie gr\u00e2ce au questionnaire PROBE (<em>Patient Reported Outcomes Burdens and Experiences)<\/em>. Les patients peuvent \u00e9galement utiliser l\u2019application pour partager les informations concernant leur \u00e9tat de sant\u00e9 avec les diff\u00e9rents soignants.<\/p>\n<p>En 2023, le RMTC a commenc\u00e9 \u00e0 recueillir des donn\u00e9es sur les personnes atteintes de la maladie de Willebrand. Avec le soutien continu des centres de traitement de l&#8217;h\u00e9mophilie (CTH) participants, nous esp\u00e9rons faire progresser la prise en charge non seulement des personnes atteintes d&#8217;h\u00e9mophilie, mais aussi celles atteintes de la maladie de Willebrand.<\/p>\n<p>La FMH tient \u00e0 saluer les efforts des centres de traitement de l&#8217;h\u00e9mophilie et de la maladie de Willebrand participant \u00e0 ce programme. Pour en savoir plus sur le Registre mondial des troubles de la coagulation (RMTC), cliquez <a href=\"https:\/\/wfh.org\/fr\/recherche-et-collecte-de-donnees\/#wbdr\" target=\"_blank\" rel=\"noopener\">ici<\/a>. Pour lire le Rapport sur les donn\u00e9es 2022 du RMTC, cliquez <a href=\"https:\/\/wfh.org\/fr\/recherche-et-collecte-de-donnees\/registre-mondial-des-troubles-de-la-coagulation\/\" target=\"_blank\" rel=\"noopener\">ici<\/a>.<\/p>\n<p><em>Le RMTC b\u00e9n\u00e9ficie du soutien financier de Sobi et Takeda, nos partenaires visionnaires, et de Grifols, F.\u00a0Hoffman-La Roche, Pfizer et Sanofi, nos partenaires collaborateurs.<\/em><\/p>\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","protected":false},"excerpt":{"rendered":"<p>Le Rapport sur les donn\u00e9es 2022 du Registre mondial des troubles de la coagulation (RMTC) de la F\u00e9d\u00e9ration mondiale de l&#8217;h\u00e9mophilie (FMH) vient d\u2019\u00eatre publi\u00e9. Cette cinqui\u00e8me \u00e9dition du rapport comprend des donn\u00e9es agr\u00e9g\u00e9es relatives \u00e0 11 374 personnes atteintes d&#8217;h\u00e9mophilie provenant de 115 centres de traitement de l&#8217;h\u00e9mophilie dans 44 pays. <\/p>\n","protected":false},"author":13,"featured_media":75303,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"inline_featured_image":false,"footnotes":""},"categories":[338,195],"tags":[],"search-category":[85],"class_list":["post-76272","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-featured-3-fr","category-recherche","search-category-article"],"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v23.4 (Yoast SEO v23.4) - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Publication du Rapport 2022 du RMTC | 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\/publication-du-rapport-2022-du-rmtc\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Publication du Rapport 2022 du RMTC\" \/>\n<meta property=\"og:description\" content=\"Le Rapport sur les donn\u00e9es 2022 du Registre mondial des troubles de la coagulation (RMTC) de la F\u00e9d\u00e9ration mondiale de l&#039;h\u00e9mophilie (FMH) vient d\u2019\u00eatre publi\u00e9. Cette cinqui\u00e8me \u00e9dition du rapport comprend des donn\u00e9es agr\u00e9g\u00e9es relatives \u00e0 11 374 personnes atteintes d&#039;h\u00e9mophilie provenant de 115 centres de traitement de l&#039;h\u00e9mophilie dans 44 pays.\" \/>\n<meta property=\"og:url\" content=\"https:\/\/wfh.org\/fr\/article\/publication-du-rapport-2022-du-rmtc\/\" \/>\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=\"2023-06-26T14:06:32+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2023-07-11T12:48:09+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/wfh.org\/wp-content\/uploads\/2023\/06\/WBDR-header.jpeg\" \/>\n\t<meta property=\"og:image:width\" content=\"1200\" \/>\n\t<meta property=\"og:image:height\" content=\"627\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/jpeg\" \/>\n<meta name=\"author\" content=\"Mitch Semienchuk\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"\u00c9crit par\" \/>\n\t<meta name=\"twitter:data1\" content=\"Mitch Semienchuk\" \/>\n\t<meta name=\"twitter:label2\" content=\"Dur\u00e9e de lecture estim\u00e9e\" \/>\n\t<meta name=\"twitter:data2\" content=\"2 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\/\/wfh.org\/fr\/article\/publication-du-rapport-2022-du-rmtc\/#article\",\"isPartOf\":{\"@id\":\"https:\/\/wfh.org\/fr\/article\/publication-du-rapport-2022-du-rmtc\/\"},\"author\":{\"name\":\"Mitch Semienchuk\",\"@id\":\"https:\/\/wfh.org\/fr\/#\/schema\/person\/f57928f0dd0ca8906b81082895256d8f\"},\"headline\":\"Publication du Rapport 2022 du RMTC\",\"datePublished\":\"2023-06-26T14:06:32+00:00\",\"dateModified\":\"2023-07-11T12:48:09+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\/\/wfh.org\/fr\/article\/publication-du-rapport-2022-du-rmtc\/\"},\"wordCount\":486,\"publisher\":{\"@id\":\"https:\/\/wfh.org\/fr\/#organization\"},\"image\":{\"@id\":\"https:\/\/wfh.org\/fr\/article\/publication-du-rapport-2022-du-rmtc\/#primaryimage\"},\"thumbnailUrl\":\"https:\/\/wfh.org\/wp-content\/uploads\/2023\/06\/WBDR-header.jpeg\",\"articleSection\":[\"Featured 3 - 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