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Review
. 2023 Mar:58:101018.
doi: 10.1016/j.blre.2022.101018. Epub 2022 Oct 1.

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

Fernando F Corrales-Medina  1 , Augusto B Federici  2 , Alok Srivastava  3 , Alison Dougall  4 , Carolyn M Millar  5 , Jonathan C Roberts  6 , Julie Jaffray  7 , Erik Berntorp  8
Affiliations
Free article
Review

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

Fernando F Corrales-Medina et al. Blood Rev. 2023 Mar.
Free article

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 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.

Keywords: Diagnosis; Haemorrhage; Heavy menstrual bleeding; VWD; von Willebrand disease.

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Conflict of interest statement

Declaration of Competing Interest FFCM has received grant/research support from Bayer and Octapharma, and honoraria or consultation fees from Bayer, Octapharma and Sanofi. ABF has received research support from Baxalta/Shire/Takeda, CSL-Behring, and honoraria or consultation fees from Baxalta/Takeda, CSL Behring, Grifols, Kedrion, LFB and Octapharma. AS has no competing interests to declare. CMM has received research support from Baxter/Takeda, CSL Behring and Grifols and honoraria or consultation fees from CSL Behring, LFB, Octapharma and Takeda. She has participated in advisory boards for Takeda and CSL Behring. JCR has disclosed receiving research support from Takeda and Genentech. He has participated in advisory boards for Sanofi Genzyme, Takeda, Octapharma, Novo Nordisk, Pfizer, and CSL Behring. He is on speaker bureaus for Sanofi Genzyme, Novo Nordisk, Octapharma, and Takeda. AD has no competing interests to declare. JJ received an unrestricted educational grant from Octapharma. EB has received grant/research support from Bayer, Baxalta/Takeda, CSL Behring and Sobi, and honoraria or consultation fees from Bayer, Baxalta/Takeda, CSL Behring and Octapharma.

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