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    Poster Networking

    Platelet Disorders, von Willebrand Disease and Thrombotic Microangiopathies

    Poster Networking Session

    PB0827 - WFH World Bleeding Disorders Registry Launches the First Global Data Collection on People with von Willebrand Disease

    Monday, June 26, 2023
    18:30 – 19:30 ET
    Room: Exhibition

      Co-Author(s)

    • EA

      Emily Ayoub

      Data and Research Manager
      World Federation of Hemophilia
      Montreal, Quebec, Canada

      • Co-Author(s)

    • Donna Coffin, MSc Epid (she/her/hers)

      Director, Research & Education
      World Federation of Hemophilia
      Montreal, Quebec, Canada

    • Barbara A. Konkle, MD (she/her/hers)

      Professor of Medicine
      University of Washington
      Seattle, Washington, United States

    • Nathan Connell, MD, MPH (he/him/his)

      Associate Professor of Medicine
      Harvard Medical School
      Boston, Massachusetts, United States

    • JS

      Jameela Sathar

      Consultant Haematologist
      Department of Hematology, Hospital Ampang, Ampang, Selangor, Malaysia
      Ampang, Selangor, Malaysia

    • SD

      Saliou Diop

      Professor of Hematology
      Cheikh Anta Diop University
      Dakar, Dakar, Senegal

    • Cedric Hermans, MD, PhD (he/him/his)

      Head Haemostasis and Thrombosis Unit
      St-Luc University Hospital
      Brussels, Brussels Hoofdstedelijk Gewest, Belgium

    • CL

      Catherine Lambert

      Hematologist
      Cliniques Universitaires Saint-Luc
      Brussels, Brussels Hoofdstedelijk Gewest, Belgium

    • DN

      Declan Noone

      President
      European Haemophilia Consortium
      Brussels, Brussels Hoofdstedelijk Gewest, Belgium

    • JO

      Jamie O'Hara

      Chief Executive Officer
      HCD Economics
      London, England, United Kingdom

    • Glenn F. Pierce, MD PhD

      VP Medical
      World Federation of Hemophilia
      Montreal, Quebec, Canada

    • PD

      Pamela Dakik

      Data and Research Coordinator
      World Federation of Hemophilia
      Montreal, Quebec, Canada

      • Presenting Author(s)

    • Ellia Tootoonchian, MPH

      Data and Research Manager
      World Federation of Hemophilia
      Montreal, Quebec, Canada

      • Co-Author(s)

    • Toong Youttananukorn, PhD

      Data Quality Manager, Gene Therapy Registry
      World Federation of Hemophilia
      Montreal, Quebec, Canada

      • Co-Author(s)

    • EG

      Emna Gouider

      Professor of Hematology
      Hôpital Aziza Othmana Tunis
      Tunis, Tunis, Tunisia

    • AI

      Alfonso Iorio

      Professor
      Department of Health Research Methods, Evidence, and Impact, McMaster University, Hamilton, ON
      Hamilton, Ontario, Canada

    Background: von Willebrand Disease (VWD) remains misdiagnosed and poorly managed, especially in settings with limited diagnostic facilities. Lack of standardized clinical data is a significant challenge hindering further research and advocacy efforts aiming to improve the lives of people with VWD.

    Aims: As part of the World Federation of Hemophilia (WFH) objectives to improve the diagnosis and management of VWD globally, the World Bleeding Disorders Registry (WBDR) is launching a first of its kind world-wide collection of real-world data on people with VWD.

    Methods: The WBDR is a prospective, longitudinal, observational registry of People with hemophilia and VWD across the world. Participating clinics contribute data on demographics, diagnostics, and clinical outcomes. The WBDR VWD dataset draft was developed in collaboration with the WFH VWD-Rare Bleeding Disorders Committee of healthcare providers, People with VWD, and advocates. The Committee recommended establishing a VWD/WBDR Working Group (WG) to develop the core dataset. The WG convened for three working sessions. The dataset was developed in line with the ASH ISTH NHF WFH 2021 guidelines on the diagnosis and the management of VWD.

    Results: The WG developed a core dataset focused, among others, on three main areas. 1) Diagnosis: VWD Type and Subtype, Bleeding Assessment Tool (BAT) Scores, seven diagnostic tests based on the Diagnosis Guidelines. 2) Clinical management: bleeds and available treatment. 3) Female-specific data: heavy menstrual bleeding, pregnancy, post-partum experience, and comorbidities. Health-Related Quality of Life (HRQOL) and socioeconomic determinants are collected to inform both advocacy and research initiatives, with the hope of improving provision of care.

    Conclusion(s): The WBDR is the first global registry collecting standardized clinical data on VWD. This global study can help identify gaps in care, monitor adherence to Guidelines, and inform policy and capacity building programs.

    WBDR is supported by Visionary Partners: SOBI, Takeda; Collaborating Partners: Bayer, Grifols, Pfizer, Novo Nordisk, Sanofi, Roche.