Corrales-Medina Fernando F, Federici Augusto B, Srivastava Alok, Dougall Alison, Millar Carolyn M, Roberts Jonathan C, Jaffray Julie, Berntorp Erik
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.
Blood Rev. 2023 Mar;58:101018. doi: 10.1016/j.blre.2022.101018. Epub 2022 Oct 1.
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 vwdtest.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. vwdtest.com helps to address these unmet needs, especially in regions with limited access to educational and diagnostic resources.
血管性血友病（VWD）是一种遗传性出血性疾病，由血管性血友病因子（VWF）的数量或质量缺陷引起。患有VWD的人可能会出现过度、反复或长时间出血，尤其是在月经期间、分娩时、手术期间或受伤后。然而，许多VWD患者未被诊断出来，因此治疗不足。VWD诊断不足的原因包括其症状相对较轻、诊断复杂、非专科医疗服务提供者和普通人群缺乏认识，以及对女性影响较大的疾病缺乏优先级。vwdtest.com平台是作为提高VWD认识和改善诊断的全球倡议的一部分推出的。除了提供特定于VWD的教育资源外，该网站还包括一个在线出血自我评估工具，并为得分提示有出血性疾病的个人及其医疗服务提供者提供诊断支持。vwdtest.com有助于满足这些未得到满足的需求，特别是在获得教育和诊断资源有限的地区。
