{"id":40651,"date":"2022-06-16T08:00:20","date_gmt":"2022-06-16T12:00:20","guid":{"rendered":"https:\/\/wfh.org\/wbdr-milestone-achieved-10000-pwh-enrolled\/"},"modified":"2024-07-11T11:38:56","modified_gmt":"2024-07-11T15:38:56","slug":"wbdr-milestone-achieved-10000-pwh-enrolled","status":"publish","type":"post","link":"https:\/\/wfh.org\/ja\/article\/wbdr-milestone-achieved-10000-pwh-enrolled\/","title":{"rendered":"WBDR milestone achieved: 10,000 PWH enrolled!"},"content":{"rendered":"\t\t<div data-elementor-type=\"wp-post\" data-elementor-id=\"40651\" class=\"elementor elementor-40651 elementor-38825\" data-elementor-post-type=\"post\">\n\t\t\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-8f5dc91 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"8f5dc91\" 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-6f898f0\" data-id=\"6f898f0\" 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-43d0fb4 elementor-widget elementor-widget-text-editor\" data-id=\"43d0fb4\" 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>Patient data are the foundation of clinical decisions and health policies\u2014and they can play a transformative role in the lives of people with bleeding disorders. For many years, the bleeding disorders community asked for more and better data to help improve patient care, inform clinical decisions, and advocate for better support. The <a href=\"https:\/\/wfh.org\/data-collection\/#wbdr\" target=\"_blank\" rel=\"noopener\">WBDR<\/a> answers this need, and offers the global community the opportunity to mitigate the gap in availability, quality, and usability of patient data at both the national and regional level.<\/p>\n<p>The important milestone of 10,000 PWH enrolled was realized one year earlier than anticipated. The WFH is deeply grateful for the participants who are contributing their data to enhance our understanding of patient care around the world.<\/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-d88649a elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"d88649a\" 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-top-column elementor-element elementor-element-edcee9c\" data-id=\"edcee9c\" 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-1125235 elementor-widget elementor-widget-text-editor\" data-id=\"1125235\" 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>During the past four years, the WFH has provided the community with several programs and resources related to the WBDR, including the following:<\/p>\n<ul>\n<li><a href=\"https:\/\/wfh.org\/request-fellowships-and-grants\/wbdr-research-support-program\/\" target=\"_blank\" rel=\"noopener\">WBDR Research Support Program<\/a> which has funded 30 research projects<\/li>\n<li><a href=\"https:\/\/wfh.org\/request-fellowships-and-grants\/wbdr-htc-funding-program\/\" target=\"_blank\" rel=\"noopener\">WBDR HTC Funding Program<\/a> which has supported 25 HTCs in their data collection activities<\/li>\n<li>Over 16 workshops offered in areas of education, data collection, and clinical evaluation<\/li>\n<\/ul>\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-50 elementor-top-column elementor-element elementor-element-a929e33\" data-id=\"a929e33\" 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-6658263 elementor-widget elementor-widget-image\" data-id=\"6658263\" 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\t<a href=\"https:\/\/wfh.org\/wp-content\/uploads\/2022\/06\/WFH-WBDR-Using-Data-to-Improve-Care-EN-F-WEB.pdf\" target=\"_blank\">\n\t\t\t\t\t\t\t<img fetchpriority=\"high\" decoding=\"async\" width=\"612\" height=\"792\" src=\"https:\/\/wfh.org\/wp-content\/uploads\/2022\/06\/WFH-WBDR-Using-Data-to-Improve-Care-EN-F-WEB.jpg\" class=\"attachment-full size-full wp-image-40433\" alt=\"\" srcset=\"https:\/\/wfh.org\/wp-content\/uploads\/2022\/06\/WFH-WBDR-Using-Data-to-Improve-Care-EN-F-WEB.jpg 612w, https:\/\/wfh.org\/wp-content\/uploads\/2022\/06\/WFH-WBDR-Using-Data-to-Improve-Care-EN-F-WEB-83x108.jpg 83w\" sizes=\"(max-width: 612px) 100vw, 612px\" \/>\t\t\t\t\t\t\t\t<\/a>\n\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\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-b9cc50a elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"b9cc50a\" 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-4de95be\" data-id=\"4de95be\" 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-63cbfb2 elementor-widget elementor-widget-spacer\" data-id=\"63cbfb2\" 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-aae9454 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"aae9454\" 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-top-column elementor-element elementor-element-9f99a25\" data-id=\"9f99a25\" 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-2026b62 elementor-widget elementor-widget-text-editor\" data-id=\"2026b62\" 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>As the WBDR grows, more features and improvements are being introduced to the platform. At the WFH 2022 World Congress, the WFH launched <a href=\"https:\/\/wfh.org\/article\/introducing-the-mywbdr-mobile-app-a-new-wbdr-data-collection-tool\/\" target=\"_blank\" rel=\"noopener\">myWBDR<\/a>, a new patient mobile app which offers a health monitoring tool and a diary for PWH, and patient-reported outcome data for researchers and clinicians. The app is available in seven languages.<\/p>\n<p>To find out more about how WBDR data can be used by researchers, treaters, and patient advocates to improve care for people with bleeding disorders, <a href=\"https:\/\/wfh.org\/data-collection\/#wbdr\" target=\"_blank\" rel=\"noopener\">click here<\/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<div class=\"elementor-column elementor-col-50 elementor-top-column elementor-element elementor-element-ebf3f0a\" data-id=\"ebf3f0a\" 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-763e797 elementor-widget elementor-widget-image\" data-id=\"763e797\" 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\t<a href=\"https:\/\/wfh.org\/wp-content\/uploads\/2022\/06\/WFH-MyWBDR-Onesheet2022-EN-F.pdf\" target=\"_blank\">\n\t\t\t\t\t\t\t<img decoding=\"async\" width=\"612\" height=\"792\" src=\"https:\/\/wfh.org\/wp-content\/uploads\/2022\/06\/WFH-MyWBDR-Onesheet2022-EN-F.jpg\" class=\"attachment-full size-full wp-image-40432\" alt=\"\" srcset=\"https:\/\/wfh.org\/wp-content\/uploads\/2022\/06\/WFH-MyWBDR-Onesheet2022-EN-F.jpg 612w, https:\/\/wfh.org\/wp-content\/uploads\/2022\/06\/WFH-MyWBDR-Onesheet2022-EN-F-83x108.jpg 83w\" sizes=\"(max-width: 612px) 100vw, 612px\" \/>\t\t\t\t\t\t\t\t<\/a>\n\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\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-a35186f elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"a35186f\" 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-9a655b6\" data-id=\"9a655b6\" 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-b556777 elementor-icon-list--layout-traditional elementor-list-item-link-full_width elementor-widget elementor-widget-icon-list\" data-id=\"b556777\" 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<span class=\"elementor-icon-list-icon\">\n\t\t\t\t\t\t\t<i aria-hidden=\"true\" class=\"fas fa-chevron-right\"><\/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\">People with hemophilia (PWH): 10,187<\/span>\n\t\t\t\t\t\t\t\t\t<\/li>\n\t\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<span class=\"elementor-icon-list-icon\">\n\t\t\t\t\t\t\t<i aria-hidden=\"true\" class=\"fas fa-chevron-right\"><\/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\">Number of HTCs: 108<\/span>\n\t\t\t\t\t\t\t\t\t<\/li>\n\t\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<span class=\"elementor-icon-list-icon\">\n\t\t\t\t\t\t\t<i aria-hidden=\"true\" class=\"fas fa-chevron-right\"><\/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\">Number of countries: 39<\/span>\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-163f541 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"163f541\" 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-top-column elementor-element elementor-element-c9b77c3\" data-id=\"c9b77c3\" 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-c5a6283 elementor-widget elementor-widget-text-editor\" data-id=\"c5a6283\" 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>The WFH would like to thank all PWH and their caregivers, HTC staff, national member organizations (NMOs), and expert volunteers for continuing to be the backbone that nurtures and sustains the WBDR as a key global resource for advocacy, research, and empowerment of PWH.<\/p>\n<p>If your HTC would like to join the WBDR, please contact us at <a href=\"mailto:WBDR@wfh.org\" target=\"_blank\" rel=\"noopener\">WBDR@wfh.org<\/a><\/p>\n<p>Read the latest WBDR data report, <a href=\"https:\/\/www1.wfh.org\/publications\/files\/pdf-2245.pdf\" target=\"_blank\" rel=\"noopener\" data-wplink-edit=\"true\">click here<\/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<div class=\"elementor-column elementor-col-50 elementor-top-column elementor-element elementor-element-4c18428\" data-id=\"4c18428\" 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-3b87076 elementor-widget elementor-widget-image\" data-id=\"3b87076\" 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\t<a href=\"https:\/\/www1.wfh.org\/publications\/files\/pdf-2245.pdf\" target=\"_blank\">\n\t\t\t\t\t\t\t<img decoding=\"async\" width=\"400\" height=\"518\" src=\"https:\/\/wfh.org\/wp-content\/uploads\/2022\/06\/WBDR-report-thumbnail.jpg\" class=\"attachment-full size-full wp-image-40423\" alt=\"\" srcset=\"https:\/\/wfh.org\/wp-content\/uploads\/2022\/06\/WBDR-report-thumbnail.jpg 400w, https:\/\/wfh.org\/wp-content\/uploads\/2022\/06\/WBDR-report-thumbnail-83x108.jpg 83w\" sizes=\"(max-width: 400px) 100vw, 400px\" \/>\t\t\t\t\t\t\t\t<\/a>\n\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\t<\/div>\n\t\t<\/section>\n\t\t\t\t<\/div>\n\t\t","protected":false},"excerpt":{"rendered":"<p>In 2018, the WFH launched the World Bleeding Disorders Registry (WBDR), providing HTCs with a simple solution to collect data. The WBDR is designed to collect standardized clinical data on people with hemophilia from a large network of hemophilia treatment centres (HTC) all around the globe. The WFH is happy to announce that 10,000 people with hemophilia (PWH)\u2014and counting\u2014have taken part in the WBDR, and, in doing so, have played an important part in improving patient care worldwide.<\/p>\n","protected":false},"author":13,"featured_media":40429,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"inline_featured_image":false,"footnotes":""},"categories":[218,217,219],"tags":[],"search-category":[85],"class_list":["post-40651","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-advocacy-ja","category-education-ja","category-medical-news-ja","search-category-article"],"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v27.2 (Yoast SEO v27.2) - https:\/\/yoast.com\/product\/yoast-seo-premium-wordpress\/ -->\n<title>WBDR milestone achieved: 10,000 PWH enrolled! | World Federation of Hemophilia<\/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\/ja\/article\/wbdr-milestone-achieved-10000-pwh-enrolled\/\" \/>\n<meta property=\"og:locale\" content=\"ja_JP\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"WBDR milestone achieved: 10,000 PWH enrolled!\" \/>\n<meta property=\"og:description\" content=\"In 2018, the WFH launched the World Bleeding Disorders Registry (WBDR), providing HTCs with a simple solution to collect data. The WBDR is designed to collect standardized clinical data on people with hemophilia from a large network of hemophilia treatment centres (HTC) all around the globe. The WFH is happy to announce that 10,000 people with hemophilia (PWH)\u2014and counting\u2014have taken part in the WBDR, and, in doing so, have played an important part in improving patient care worldwide.\" \/>\n<meta property=\"og:url\" content=\"https:\/\/wfh.org\/ja\/article\/wbdr-milestone-achieved-10000-pwh-enrolled\/\" \/>\n<meta property=\"og:site_name\" content=\"World Federation of Hemophilia\" \/>\n<meta property=\"article:publisher\" content=\"https:\/\/www.facebook.com\/wfhemophilia\/\" \/>\n<meta property=\"article:published_time\" content=\"2022-06-16T12:00:20+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2024-07-11T15:38:56+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/wfh.org\/wp-content\/uploads\/2022\/06\/WBDR-10K-header-EN.png\" \/>\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\/png\" \/>\n<meta name=\"author\" content=\"Mitch Semienchuk\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"\u57f7\u7b46\u8005\" \/>\n\t<meta name=\"twitter:data1\" content=\"Mitch Semienchuk\" \/>\n\t<meta name=\"twitter:label2\" content=\"\u63a8\u5b9a\u8aad\u307f\u53d6\u308a\u6642\u9593\" \/>\n\t<meta name=\"twitter:data2\" content=\"2\u5206\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\/\/wfh.org\/ja\/article\/wbdr-milestone-achieved-10000-pwh-enrolled\/#article\",\"isPartOf\":{\"@id\":\"https:\/\/wfh.org\/ja\/article\/wbdr-milestone-achieved-10000-pwh-enrolled\/\"},\"author\":{\"name\":\"Mitch Semienchuk\",\"@id\":\"https:\/\/wfh.org\/ja\/#\/schema\/person\/4aea5b13c1966452a640eef39423925b\"},\"headline\":\"WBDR milestone achieved: 10,000 PWH enrolled!\",\"datePublished\":\"2022-06-16T12:00:20+00:00\",\"dateModified\":\"2024-07-11T15:38:56+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\/\/wfh.org\/ja\/article\/wbdr-milestone-achieved-10000-pwh-enrolled\/\"},\"wordCount\":340,\"publisher\":{\"@id\":\"https:\/\/wfh.org\/ja\/#organization\"},\"image\":{\"@id\":\"https:\/\/wfh.org\/ja\/article\/wbdr-milestone-achieved-10000-pwh-enrolled\/#primaryimage\"},\"thumbnailUrl\":\"https:\/\/wfh.org\/wp-content\/uploads\/2022\/06\/WBDR-10K-header-EN.png\",\"articleSection\":[\"Advocacy\",\"Education\",\"Medical news\"],\"inLanguage\":\"ja\"},{\"@type\":\"WebPage\",\"@id\":\"https:\/\/wfh.org\/ja\/article\/wbdr-milestone-achieved-10000-pwh-enrolled\/\",\"url\":\"https:\/\/wfh.org\/ja\/article\/wbdr-milestone-achieved-10000-pwh-enrolled\/\",\"name\":\"WBDR milestone achieved: 10,000 PWH enrolled! 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