Patients who have severe bleeding from VWD are rare and face unique challenges. The frequency and severity of their bleeding symptoms call for a more intensive treatment approach than what works for most VWD patients. However, until now, the medical community has lacked a clear, universally accepted definition of what constitutes “severe” VWD.  How can anyone serve a population that remains undefined?

IDENTIFYING THE NEED

Without a definitive system to qualify patients with VWD as “severe”, there has been no standardization of what severe bleeding looks like and who suffers from it. This lack of clarity has made it impossible to understand the true prevalence of severe VWD, and has led to inconsistencies in diagnosis, treatment, and care across the globe. As the U.S. national patient organization for severe VWD, the Foundation was uniquely poised to address this critical research gap.

A GLOBAL PANEL OF EXPERTS

 In 2023, VWD Connect Foundation convened an International Consensus Panel of leading hematology clinicians and researchers, patients, and key stakeholders from around the world. This group of specialists brought together diverse perspectives and expertise to tackle the challenge of defining "severe" VWD. The panel adopted a collaborative and systematic approach to ensure the definition would be comprehensive and applicable worldwide.

Read more about the start of the project in our November 2023 newsletter

THE MODIFIED DELPHI METHOD

To create the proposed definition, the panel employed a modified Delphi method. This structured, iterative process is widely used for achieving consensus in complex areas of medicine. Through multiple rounds of surveys and discussions, the panel reviewed evidence, shared insights, and refined their criteria until a consensus was reached. The method ensured that the definition was both evidence-based and reflective of real-world experiences of patients and clinicians.

SHARING THE VISION

The project garnered significant attention and support even before the definition was finalized. It was adopted by the International Society on Thrombosis and Haemostasis (ISTH) Scientific and Standardization Committee (SSC) Subcommittee on Von Willebrand Factor, illuminating the importance of the project early in the process. In June 2024, Dr. Tung Wynn, chair of the consensus panel, presented the project at the ISTH conference, introducing it to the broader hematology community. Later, in November 2024, the project was shared at VWD Connect Foundation's Provider Education Workshop, further expanding its reach.

Once the final consensus was reached, the proposed definition was formally presented at the American Society of Hematology (ASH) Conference in 2024. This prestigious event provided a platform to share the groundbreaking work with the global hematology community. The poster presentation met with enthusiasm, sparking important discussions about the implications for patient care, research, and policy.

Project Listing on ISTH SSC Subcommittee on Von Willebrand Factor            

Project Presentation – Dr. Tung Wynn, 2024 VWD Connect Provider Education Workshop on sVWD

Poster Presented at ASH 2024

LOOKING AHEAD

This new definition of "severe" VWD has already been embraced by key stakeholders in the bleeding disorder circle. The Foundation hopes that it will continue to be widely adopted by healthcare providers, researchers, and industry professionals around the world. A standardized definition has the potential to:

• Improve diagnosis and treatment consistency.

• Enhance patient access to appropriate care.

• Drive targeted research efforts.

• Support advocacy for better healthcare resources.

CONCLUSION

The work of VWD Connect Foundation and the International Consensus Panel represents a landmark achievement in the field of hematology. Through collaboration, innovation, and a patient-centered focus, they have paved the way for a clearer understanding of severe VWD. As the medical community embraces this definition, the Foundation’s vision of a better future for those with severe VWD comes closer to reality.