need to increase von Willebrand disease awareness: vwdtest.com – A global initiative to help address this gap

Authors:Corrales-Medina, FF; Federici, AB; Srivastava, A; Dougall, A; Millar, CM; Roberts, JC; Jaffray, J; Berntorp, E

Affiliations: Division of Pediatric Hematology-Oncology, Department of Pediatrics, University of Miami-Miller School of Medicine, Miami, FL, USA. University of Miami-Hemophilia Treatment Center, Miami, FL, USA. University of Milan, School of Medicine, Department of Oncology and Haematology Oncology, Milan, Italy. Division of Haematology and Transfusion Medicine of Luigi Sacco University Hospital, Milan, Italy. Christian Medical College, Department of Haematology, Vellore, India. School of Dental Science, Trinity College Dublin, Ireland. Dublin Dental University Hospital, Dublin, Ireland. Imperial College London, Department of Immunology and Inflammation, Centre for Haematology, London, UK. Bleeding & Clotting Disorders Institute, Peoria, IL, USA. University of Illinois College of Medicine at Peoria, Department of Pediatrics and Medicine, Peoria, IL, USA. Children’s Hospital Los Angeles, University of Southern California, Keck School of Medicine, Los Angeles, CA, USA. Clinical Coagulation Research, Department of Translational Medicine, Lund University, Malmö, Sweden

Publication: Blood reviews; 2022. 101018

Abstract: Von Willebrand disease (VWD) is an inherited bleeding disorder caused by quantitative or qualitative deficiencies in von Willebrand factor (VWF). People with VWD may experience excessive, recurrent or prolonged bleeding, particularly during menstruation, childbirth, surgery or following trauma. However, many VWD patients are undiagnosed, and therefore inadequately treated. Reasons for the underdiagnosis of VWD include its relatively mild symptoms, complex diagnosis, lack of awareness among non-specialist healthcare providers and the general population, and a lack of prioritisation of disorders disproportionately affecting females. The vw dtest.com platform was launched as part of a global initiative to raise awareness and improve diagnosis of VWD. Besides providing VWD-specific educational resources, the website includes an online bleeding self-assessment tool and offers diagnostic support for individuals, and their providers, who have a score suggestive of a bleeding disorder.