SSC Subcommittee on Von Willebrand Factor

The von Willebrand factor (VWF) subcommittee is focused on the genetics, biology and function of VWF and its protease ADAMTS13, its relationship with cells and other molecules and all laboratory and clinical issues related to these processes, with special emphasis on von Willebrand Disease (VWD). This subcommittee incorporates hematologists and laboratory professionals promoting and facilitating collaborative basic and clinical research projects.

If you are interested in the subcommittee and want to follow its activity, please click "join community" to participate. 

Mandate

• To evaluate existing evidence and community opinion regarding the genotype-phenotype relationship in VWD and its clinical application.
• To review and define VWF/VWD nomenclature as appropriate.
• To refine clinical and laboratory diagnostic tools and assays for assessment of VWF and ADAMTS13 function
• To aid clinical decision making via guidance on diagnosis and treatment of VWD and TTP.
• To promote education and research to better understand the role of VWF in thrombotic disorders, cancer, immunity and angiogenesis.
• To provide a vehicle for collaborative, multidisciplinary research in BDUC, mild/moderate bleeding disorders, VWF-platelet interactions, and the role of shear stress in the regulation of VWF function.

Role

The following are the ongoing activities and responsibilities of the Subcommittee (please see below for active projects).

• Continuing support for the VWF database, which is aim to provide a comprehensive resource for VWF and VWD
• International registry on acquired von Willebrand Syndrome.
• International reference preparation for ADAMTS13 activity
• Platelet-type VWD database
• Comparison of VWF activity assays
• Desmopressin in the management of VWD
• Standardization of VWF propeptide (VWFpp) assays
• Multimer methodology and minimal diagnostic requirements

If you are a member of the Society and would like to know how to participate in the work of this group, please join the group to receive updates on activity or submit an Expression of Interest Form to the Chairman or any of the Co-Chairmen. We would be pleased to learn of your interest.

Leadership

• Chair - Jamie O'Sullivan 
• Co-chair - Christopher Ng
• Co-chair - Qian Liang
• Co-chair - Ferdows Atiq
• Co-chair - Brooke Sadler
• Co-chair - Dino Mehic
• Co-chair - Karen Vanhoorelbeke
• Co-chair - Anna Randi
• Co-chair - Megan Brown

Projects

• NEW! Bleeding Disorder of Unknown Cause - International Survey of Current Practice

project began: 2022, projected end: 2023

• Development of Consensus on Standardized Nomenclature for PT-VWD
  project began: 2021, projected end 2021; See Registry Here
• International Society on Thrombosis and Haemostasis Bleeding Assessment Tool (ISTH-BAT) Bleeding Score in Normal Children project began: 2023, projected end: 2024
• Guidance on the Management of Women with Type 2B von Willebrand Disease During Pregnancy and Postpartum
  project began: 2019, projected end: 2022
• VWF Database
  project began: 2000, project is ongoing
• Consensus Expert Panel Opinion to Develop a Criteria Definition of Severe Von Willebrand Disease project began: 2023, projected end: 2024
• International registry on acquired Von Willebrand Syndrome (intreavws)
  project began: 2004, project is ongoing
• Examining current practices in the management of pregnancy in women with low von Willebrand factor and von Willebrand disease
  project began: 2018, project is ongoing
• International Microangiopathic Thrombocytopenia ADAMTS-13 Standardization (IMATAS) Collaborative study
  project began: 2019, projected end: 2022

Official Communications

• Minutes
• Bibliography
• Publication Guidelines