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Presentation Details
| Global Reach and Clinical Impact of VWDtest.com: Advancing Awareness and Early Detection of von Willebrand Disease Fernando F Corrales-Medina1, 2, Robert F Sidonio Jr3, Veronica Flood4, 5, Ana Boban6, 7, Susan Halimeh8, María Teresa Álvarez Román9, Nathan T.Connell10, Laura Villarreal-Martínez11, Alok Srivastava12, Erik Berntorp13. 1Division of Pediatric Hematology/Oncology, Department of Pediatrics, University of Miami Miller School of Medicine, Miami, FL, USA.2University of Miami-Hemophilia and Thrombosis Treatment Center, Miami, FL, USA.3Associate Professor of Pediatrics, Aflac Cancer and Blood Disorders Center, Emory University, Atlanta, GA, USA.4Department of Pediatrics, Medical College of Wisconsin, Milwaukee, WI, USA.5Versiti Blood Research Institute, Milwaukee, WI, USA.6Haemophilia Center, Department of Internal Medicine, University Hospital Centre Zagreb, Zagreb, Croatia.7Zagreb University School of Medicine, Zagreb, Croatia.8Gerinnungszentrum Rhein-Ruhr (GZRR), Duisburg, Germany.9La Paz University Hospital, Madrid, Spain.10 Boston Bleeding Disorders Center, Brigham and Women’s Hospital, Harvard Medical School, Boston, MA, USA.11Dr.Jose Eleuterio Gonzalez Monterrey University Hospital, Monterrey, Mexico.12St.John’s Research Institute & St.John’s Medical College Hospital, Bengaluru, India.13Clinical Coagulation Research, Department of Translational Medicine, Lund University, Malmö, Sweden |
Abstract
Background: Von Willebrand disease (VWD) is the world’s most common inherited bleeding disorder. However, it remains substantially underdiagnosed. A major diagnostic challenge is the scarcity of region-specific and language-adapted resources to support early identification and disease awareness among patients and non-haematologist healthcare providers (HCPs). To help address this gap, VWDtest.com, a global, multilingual platform offering a self-administered Bleeding Assessment Tool (self-BAT) and downloadable Pictorial Blood Assessment Chart (PBAC) was launched in 2019. Early utilisation confirmed global need, prompting additional regional adaptations shaped by patient and HCP feedback. In 2024, the platform was modernised to expand accessibility and strengthen its diagnostic impact. Objectives and Methods: Overall user engagement was analysed across the full lifecycle of VWDtest.com, with a specific sub-analysis of the post-relaunch period beginning March 2024. Metrics included visitor volume, regional utilisation patterns, and outcomes of completed self-BATs, including age and gender distribution, and symptom profiles. Results: VWDtest.com includes 20 regional adaptations, with all materials optimised for mobile access and translated in multiple languages (including Spanish, Portuguese, French, German, and Arabic) to ensure global accessibility. Overall, the platform has welcomed over 680,000 visitors worldwide, with more than 45,000 self-BATs completed. Engagement has been strongest in Latin America (62%), but steadily growing across Europe (15%), North America (14%) and the Middle East (8%), demonstrating broad global reach (Figure 1). Since March 2024, 25,926 self-BATs have been completed, with 42% indicating results suggestive of a potential bleeding disorder (Figure 2). Among users, 55% were aged 21–40 years, and 13% younger than 18 years. Women accounted for 89% of completions, with 43% reporting heavy menstrual bleeding (PBAC score ≥100), highlighting ongoing gaps in menstrual-health recognition. Beyond menstrual symptoms, the most frequently reported bleeding events were recurrent epistaxis and dental-procedure-related bleeding, common presentations in paediatric, dental, and gynaecologic settings. In response, VWDtest.com now includes specialty-tailored resources to support earlier recognition and referral by frontline providers. Conclusions: Strong global engagement and high rates of abnormal self-BAT results emphasise the value of VWDtest.com in promoting early symptom recognition, particularly among women and in regions with limited diagnostic access. Supported by a multinational physician steering committee and local patient organisations, this initiative illustrates how collaborative, digital tools can reduce underdiagnosis and strengthen global VWD awareness.
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No part of this publication may be reproduced, distributed, or transmitted in any form or by any means, including photocopying, recording, or other electronic or mechanical methods, without the prior written permission of the author.