{"id":37178,"date":"2022-05-09T13:30:08","date_gmt":"2022-05-09T17:30:08","guid":{"rendered":"https:\/\/wfh.org\/young-researchers-free-paper-sessions-part-1\/"},"modified":"2024-04-11T08:44:38","modified_gmt":"2024-04-11T12:44:38","slug":"young-researchers-free-paper-sessions-part-1","status":"publish","type":"post","link":"https:\/\/wfh.org\/fr\/article\/young-researchers-free-paper-sessions-part-1\/","title":{"rendered":"Young Researchers free paper sessions \u2013 part 1"},"content":{"rendered":"\t\t<div data-elementor-type=\"wp-post\" data-elementor-id=\"37178\" class=\"elementor elementor-37178 elementor-36892\" data-elementor-post-type=\"post\">\n\t\t\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-9c72ee8 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"9c72ee8\" 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-22c3d9b\" data-id=\"22c3d9b\" 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-f0b2ac9 elementor-widget elementor-widget-text-editor\" data-id=\"f0b2ac9\" 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 class=\"\">The first presentation of the session was, \u201cPatients\u2019 and Healthcare Providers\u2019 Experiences with Hemophilia Care in the Netherlands: a Survey and Interview Study\u201d given by Martijn Brands, MD, PhD-candidate at the Department of Pediatric Hematology, Emma Children\u2019s Hospital, Amsterdam UMC, University of Amsterdam, Netherlands. Brands began by covering the patient perspective. The study showed that 96.5% of patients are very satisfied with their care. Patients usually ask what the new treatment options are, and how they can learn from others and better organize care for themselves. When it comes to new developments, patients also wonder if the new treatment will come to their country, and if it will be prescribed by their healthcare practitioner (HCP).<\/p>\n<p class=\"\">Brands also reported his findings regarding the difference between getting care from hemophilia treatment centres (HTCs) versus non-HTCs. The study found that care at HTCs is faster, friendlier, and more engaged. Also, when treated at non-HTCs, patients see multiple doctors, so there is sometimes less accountability. The issue of having access to a computer for virtual care was also discussed. In this case, the concern is that some patients don\u2019t have access to a computer, and those that do sometimes feel that the quality of virtual care is inferior to that of home care. The conclusion is that care delivered outside of HTCs is less organized than care delivered within HTCs. Also, HTCs can improve coordination by appointing one professional who is responsible, and by improving the digital exchange of health information.<\/p>\n<p class=\"\">Lieke Baas, PhD Candidate, Julius Centre for Health Sciences and Primary Care, University Medical Centre Utrecht, Netherlands gave a talk called, \u201cEthical concerns of gene transfer for haemophilia: A qualitative interview study\u201d. The talk shared into Dutch stakeholders\u2019 morally reasoned opinions on gene transfer for people with severe hemophilia. Some concerns regarding gene therapy treatment were feared increased dependence, continued uncertainty even if the person is considered \u201ccured\u201d, different perception of risks and burdens, individual differences, and physician trust. One conclusion was that no participant considered themselves hemophilia-free after treatment. Despite the many questions, however, no participants were opposed to gene therapy, and many participants were eager to participate in research.<\/p>\n<p class=\"\">\u201cManagement of women with type 2B von Willebrand disease during pregnancy and postpartum: Evidence from literature, data from international registry and physician survey\u201d was given by Abdelrahman Noureldin from Queen\u2019s University, Canada. Von Willebrand disease (VWD) presents challenges, including with diagnosis. Specifically, poor application of RIPA\/ RIPA mixing studies; genotype phenotype variations; poor awareness; and the physiological rise in VWF during pregnancy are all of concern. The research looked at demographic data, hemostatic lab parameters, bleeding complications, lab parameters stratified by bleeding, treatment modalities, mode of delivery and pregnancy outcomes, and international survey data. The conclusions were that the patients had a high risk of bleeding complications; that there was no safe target of VWF levels identified; that diverse practices exist in terms of types, dosing and timing of therapy; and that international guidance was needed to inform management.<\/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-c120c26 elementor-widget elementor-widget-spacer\" data-id=\"c120c26\" data-element_type=\"widget\" data-widget_type=\"spacer.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-column .elementor-spacer-inner{height:var(--spacer-size)}.e-con{--container-widget-width:100%}.e-con-inner>.elementor-widget-spacer,.e-con>.elementor-widget-spacer{width:var(--container-widget-width,var(--spacer-size));--align-self:var(--container-widget-align-self,initial);--flex-shrink:0}.e-con-inner>.elementor-widget-spacer>.elementor-widget-container,.e-con>.elementor-widget-spacer>.elementor-widget-container{height:100%;width:100%}.e-con-inner>.elementor-widget-spacer>.elementor-widget-container>.elementor-spacer,.e-con>.elementor-widget-spacer>.elementor-widget-container>.elementor-spacer{height:100%}.e-con-inner>.elementor-widget-spacer>.elementor-widget-container>.elementor-spacer>.elementor-spacer-inner,.e-con>.elementor-widget-spacer>.elementor-widget-container>.elementor-spacer>.elementor-spacer-inner{height:var(--container-widget-height,var(--spacer-size))}.e-con-inner>.elementor-widget-spacer.elementor-widget-empty,.e-con>.elementor-widget-spacer.elementor-widget-empty{position:relative;min-height:22px;min-width:22px}.e-con-inner>.elementor-widget-spacer.elementor-widget-empty .elementor-widget-empty-icon,.e-con>.elementor-widget-spacer.elementor-widget-empty .elementor-widget-empty-icon{position:absolute;top:0;bottom:0;left:0;right:0;margin:auto;padding:0;width:22px;height:22px}<\/style>\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<\/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-20a746d elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"20a746d\" data-element_type=\"section\" data-settings=\"{&quot;background_background&quot;:&quot;gradient&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-top-column elementor-element elementor-element-eb1ff43\" data-id=\"eb1ff43\" 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-3f485fe elementor-widget elementor-widget-heading\" data-id=\"3f485fe\" data-element_type=\"widget\" data-widget_type=\"heading.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-heading-title{padding:0;margin:0;line-height:1}.elementor-widget-heading .elementor-heading-title[class*=elementor-size-]>a{color:inherit;font-size:inherit;line-height:inherit}.elementor-widget-heading .elementor-heading-title.elementor-size-small{font-size:15px}.elementor-widget-heading .elementor-heading-title.elementor-size-medium{font-size:19px}.elementor-widget-heading .elementor-heading-title.elementor-size-large{font-size:29px}.elementor-widget-heading .elementor-heading-title.elementor-size-xl{font-size:39px}.elementor-widget-heading .elementor-heading-title.elementor-size-xxl{font-size:59px}<\/style><h3 class=\"elementor-heading-title elementor-size-default\">WFH 2022 World Congress<\/h3>\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-d7c6400 elementor-widget elementor-widget-heading\" data-id=\"d7c6400\" data-element_type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t<span class=\"elementor-heading-title elementor-size-default\">May 8 to 11, 2022<\/span>\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-2b428d8 elementor-widget elementor-widget-spacer\" data-id=\"2b428d8\" data-element_type=\"widget\" data-widget_type=\"spacer.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\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<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-3230f79 elementor-widget elementor-widget-text-editor\" data-id=\"3230f79\" 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><a href=\"https:\/\/congress.wfh.org\/registration\/register-now\/\" target=\"_blank\" rel=\"noopener noreferrer\"><strong>Register now!<\/strong><\/a><\/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>Today, \u201cYoung Researchers free paper sessions \u2013 Part 1\u201d was held at the WFH 2022 World Congress in Montreal, Canada. The talk was chaired by Johnny Mahlangu, Professor at the University of the Witwatersrand and NHLS, Johannesburg, South Africa.<\/p>\n","protected":false},"author":3,"featured_media":37014,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"inline_featured_image":false,"footnotes":""},"categories":[187,184],"tags":[],"search-category":[],"class_list":["post-37178","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-congres-mondiale-de-la-fmh","category-programme-daide-humanitaire-de-la-fmh"],"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>Young Researchers free paper sessions \u2013 part 1 | 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\/young-researchers-free-paper-sessions-part-1\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Young Researchers free paper sessions \u2013 part 1\" \/>\n<meta property=\"og:description\" content=\"Today, \u201cYoung Researchers free paper sessions \u2013 Part 1\u201d was held at the WFH 2022 World Congress in Montreal, Canada. The talk was chaired by Johnny Mahlangu, Professor at the University of the Witwatersrand and NHLS, Johannesburg, South Africa.\" \/>\n<meta property=\"og:url\" content=\"https:\/\/wfh.org\/fr\/article\/young-researchers-free-paper-sessions-part-1\/\" \/>\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=\"2022-05-09T17:30:08+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2024-04-11T12:44:38+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/wfh.org\/wp-content\/uploads\/2022\/05\/news-young-researchers-part1-may9.jpg\" \/>\n\t<meta property=\"og:image:width\" content=\"1200\" \/>\n\t<meta property=\"og:image:height\" content=\"700\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/jpeg\" \/>\n<meta name=\"author\" content=\"Electra Rozakis\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"\u00c9crit par\" \/>\n\t<meta name=\"twitter:data1\" content=\"Electra Rozakis\" \/>\n\t<meta name=\"twitter:label2\" content=\"Dur\u00e9e de lecture estim\u00e9e\" \/>\n\t<meta name=\"twitter:data2\" content=\"3 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\/\/wfh.org\/fr\/article\/young-researchers-free-paper-sessions-part-1\/#article\",\"isPartOf\":{\"@id\":\"https:\/\/wfh.org\/fr\/article\/young-researchers-free-paper-sessions-part-1\/\"},\"author\":{\"name\":\"Electra Rozakis\",\"@id\":\"https:\/\/wfh.org\/fr\/#\/schema\/person\/590cf0d3a057aaef67b154adeffbf31d\"},\"headline\":\"Young Researchers free paper sessions \u2013 part 1\",\"datePublished\":\"2022-05-09T17:30:08+00:00\",\"dateModified\":\"2024-04-11T12:44:38+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\/\/wfh.org\/fr\/article\/young-researchers-free-paper-sessions-part-1\/\"},\"wordCount\":512,\"publisher\":{\"@id\":\"https:\/\/wfh.org\/fr\/#organization\"},\"image\":{\"@id\":\"https:\/\/wfh.org\/fr\/article\/young-researchers-free-paper-sessions-part-1\/#primaryimage\"},\"thumbnailUrl\":\"https:\/\/wfh.org\/wp-content\/uploads\/2022\/05\/news-young-researchers-part1-may9.jpg\",\"articleSection\":[\"Congr\u00e8s mondiale de la FMH\",\"Programme d\u2019aide humanitaire de la FMH\"],\"inLanguage\":\"fr-FR\"},{\"@type\":\"WebPage\",\"@id\":\"https:\/\/wfh.org\/fr\/article\/young-researchers-free-paper-sessions-part-1\/\",\"url\":\"https:\/\/wfh.org\/fr\/article\/young-researchers-free-paper-sessions-part-1\/\",\"name\":\"Young Researchers free paper sessions \u2013 part 1 | FMH - 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