RESEARCH AND DATA COLLECTION

Research and Data Collection

Our research and data collection efforts are brought together under the WFH Research and Data Collection Program, which includes the Annual Global Survey, the World Bleeding Disorders Registry, the Gene Therapy Registry, and their accompanying education and capacity building programs. Our objective is to provide national member organizations (NMOs) and hemophilia treatment centres (HTCs) with the tools to increase their capacity, the framework to collect data on people with bleeding disorders, and the education and training to use that data to conduct research and advocate for better care.

ANNUAL GLOBAL SURVEY

The Annual Global Survey is a yearly cross-sectional survey of WFH national member organizations (NMOs) that includes country-level demographic and treatment-related data on people with hemophilia (PWH), von Willebrand disease (VWD), rare factor deficiencies, and inherited platelet disorders.

GENE THERAPY REGISTRY

Gene therapy is a new and evolving therapeutic modality for hemophilia. Clinical trials have established the efficacy of gene therapy in decreasing bleeding and use of hemostatic treatment for at least five to eight years post-infusion. However, many unresolved questions on the long-term safety, variability and durability of efficacy remain at the completion of initial clinical trial programs. Lifelong follow‐up of patients is crucial to monitor long-term safety and efficacy of gene therapy.

WORLD BLEEDING DISORDERS REGISTRY

The WBDR is the only global registry collecting standardized clinical data on people with hemophilia (PWH) and people with von Willebrand disease (VWD). The WBDR provides a web-based data entry platform to a large network of participating hemophilia treatment centres (HTCs) to collect and manage their data.

TREATMENT GUIDELINES

The WFH works to provide the most up-to-date and evidence-based standards of care for the global bleeding disorders community. 

Guidelines for the Management of Hemophilia

The WFH Guidelines for the Management of Hemophilia, 3rd edition was developed by an international panel of expert healthcare professionals (HCPs) and people with hemophilia (PWH) and published in August 2020. The objective of the publication is to set the standard of care globally and work to ensure all HCPs and PWH have access to the latest and most up-to-date treatment recommendations, ultimately producing optimal health outcomes for PWH, minimizing harm, and reducing variations in clinical care globally.

The published guidelines and derived material can be found on the Treatment Guidelines Resource Hub.

Guidelines for diagnosis and management of von Willebrand Disease

These clinical practice guidelines for the diagnosis and management of von Willebrand disease (VWD) were developed in collaboration with the American Society for Hematology (ASH), the International Society on Thrombosis and Haemostasis (ISTH), and National Hemophilia Foundation (NHF) and published in 2021. These recommendations offer important guidance on prophylaxis, major and minor surgeries, heavy menstrual and postpartum bleeding, diagnostic thresholds, genetic testing, and much more. They constitute a valuable resource for clinicians and people with VWD in their shared decision making about individual care. They also form a solid foundation for the essential advocacy work to improve access to the recommended diagnostic techniques and treatment options in all countries.

The published guidelines and derived material can be found online at: