Von Willebrand Disease: Bridging the Evidence Gap with a Call to Action for Equitable Care
Nathan Connell, Hematologist at Harvard Medical School, shared a post on LinkedIn:
“Thank you to Drs. Kelsey Uminski, Paula James, and Roy Khalife for asking me to join them in preparing this commentary in Haemophilia Journal, “Bridging the Evidence Gap in von Willebrand Disease: A Call to Action for Equitable, Evidence-Based Care.”
For decades, von Willebrand disease (VWD), the most common inherited bleeding disorder, has been under-researched compared to hemophilia. This evidence gap has led to significant challenges in patient care, including clinical uncertainties and wide variability in practice. This paper outlines why this gap exists and presents a coordinated, five-point research agenda to help close it:
▪️Patient-Centered Trial Design: Shifting away from endpoints that don’t capture the full impact of VWD and focusing on what matters most to patients, like the effect on quality of life.
▪️Adoption of Core Outcome Sets: Standardizing key outcomes to make research more comparable and clinically applicable.
▪️PK-Guided Therapy: Developing accessible tools for individualized, precise dosing, similar to what has revolutionized hemophilia care.
▪️Network Research and Real-World Data: Expanding registries and networks to gather data and better understand long-term outcomes for patients.
▪️Embedded Patient and Clinician Partnerships: Meaningfully engaging with patients and providers to ensure research questions are relevant to real-world needs.
This call to action is about more than just science; it’s about equity. VWD has suffered from historical underinvestment and under recognition, especially for conditions that disproportionately affect women. We believe equitable care requires equitable evidence, and VWD is too important to overlook.
Read the full commentary here.”
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