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Are We Overlooking What Matters Most to Women with Von Willebrand Disease? – RPTH Journal
RPTH Journal/LinkedIn
Aug 14, 2026, 23:16

Are We Overlooking What Matters Most to Women with Von Willebrand Disease? – RPTH Journal

RPTH Journal shared a post on LinkedIn about a recent article by Meaghan O’Donnell et al, adding:

“Are we overlooking what matters most to women with von Willebrand disease?

Heavy menstrual bleeding (HMB) is the most common and often the most severe bleeding symptom in women with von Willebrand disease (VWD). Yet a review of interventional VWD prophylaxis trials found that menstrual outcomes remain strikingly underrepresented in study design and reporting.

Among 10 eligible clinical trials, only 2 (20%) incorporated menstrual-related inclusion criteria, while 4 (40%) specifically excluded treated menstrual bleeding from bleed eligibility criteria. Although 80% of studies measured annualized bleeding rates, only 40% collected menstrual outcomes, highlighting a disconnect between trial endpoints and the experiences of many patients.

The authors argue that VWD trials have largely adopted outcome measures designed for hemophilia, rather than focusing on female-specific bleeding.

They call for future studies to incorporate menstrual outcomes, improve reporting of women of reproductive age, and ensure clinical trial design better reflects the needs of people living with VWD.”

Title: Menstrual outcomes are frequently overlooked in von Willebrand disease trials

Authors: Meaghan O’Donnell, Claire Kelly, Rezan Abdul Kadir, Roseline D’Oiron, Petra Elfvinge, Gaby Golan, Keith Gomez, Samantha C. Gouw, Laura Quintas, Karin P.M. van Galen, Michelle Lavin

RPTH Journal

Other posts featuring RPTH Journal on Hemostasis Today.

bleeding bleeding disorders Blood Claire Kelly Gaby Golan Health heavy menstrual bleeding Hematology Hemophilia Hemostasis Hemostasis News Hemostasis Today HMB Karin P. M. van Galen Keith Gomez Laura Quintas Meaghan O'Donnell Medicine Michelle Lavin Petra Elfvinge Rezan Abdul Kadir Roseline d'Oiron RPTH Journal Samantha C. Gouw Von Willebrand Disease VWD
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