The WFH Annual Global Survey: Gender Distribution
Objective: Through the Annual Global Survey (AGS), the World Federation of Hemophilia (WFH) has been collecting national aggregate data on people with bleeding disorders since 1999. Lack of diagnosis and treatment for women and…
The WFH Launches World Bleeding Disorders Registry to Expand Knowledge Base Worldwide
Management of Hemophilia B in US Women and Its Impact on Education, Employment, and Activities: Results From the Bridging Hemophilia B Experiences, Results, and Opportunities Into Solutions (B-HERO-S) Study
Objective: The B-HERO-S study assessed the impact of hemophilia on US adults with hemophilia B, including affected females. Here we describe the symptoms, management, and impact on education, employment, and engagement in…
Lessons Learned in the Assessment of Pain in US Adults With Hemophilia in the Pain, Functional Impairment, and Quality of Life (P-FiQ) Study: Importance of More Formalized Discussions Around Pain in the Comprehensive Care Setting
Objective: People with hemophilia frequently experience joint bleeds, resulting in pain and functional impairment. The P-FiQ study formally evaluated patient-reported pain descriptions, responses to standardized patient-reported…
Lessons Learned From the Assessment and Prevalence of Anxiety and Depression in US Adults With Hemophilia in the Pain, Functional Impairment, and Quality of Life (P-FiQ) Study: Importance of Routine Screening and Comprehensive Approaches to Management
Objective: Pain and functional impairment resulting from joint disease in patients with hemophilia (PWH) may impact emotional well-being, resulting in consistent reports of anxiety/depression. The P-FiQ study formally evaluated…
Lessons Learned in the Assessment of Functional Status in US Adults With Hemophilia in the Pain, Functional Impairment, and Quality of Life (P-FiQ) Study: Importance of More Formalized Assessment of Function in the Comprehensive Care Setting
Objective: Functional impairment from recurrent joint bleeding in people with hemophilia results in joint pain and reduces quality of life. The P-FiQ study formally evaluated patient- and site-reported functional assessment…
Prevalence of gross motor delays in boys with hemophilia ages 4-14: single site study
Objective: The aim of this study was to determine if the young boys with hemophilia at our clinic have gross motor delays that may have been missed during the annual physical therapy evaluation. By identifying delays, our clinic…
Assessment of numeracy, genetic knowledge and perceptions of genetic testing in carriers of Hemophilia A and B
Estimating the prevalence of symptomatic, undiagnosed von Willebrand disease: analysis of medical insurance claims data
Objectives: Von Willebrand disease (VWD) is a common inherited bleeding disorder, but awareness among healthcare professionals is low. Timely and proper diagnosis integral for reducing VWD burden, access to proper therapies, and…
A Cumulative Review on Four Decades of Thrombo-Embolic Events Reported with the Use of Activated Prothrombin Complex Concentrate (APCC) in Congenital Haemophilia