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RESEARCH AND DATA COLLECTION
Annual Global Survey
Gene Therapy Registry
World Bleeding Disorders Registry
Treatment Guidelines

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.

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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.

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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.

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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:

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Also available in: English

Disclaimer

The information on the WFH USA website is provided for general information purposes only. The WFH USA does not engage in the practice of medicine and under no circumstances recommends particular treatment for specific individuals. For diagnosis or consultation on a specific medical problem, the WFH USA recommends that you contact your physician or local treatment centre. Before administering any products, the WFH USA urges patients to check dosages with a physician or hemophilia centre staff, and to consult the pharmaceutical company’s printed instructions.

While every effort has been made to ensure the accuracy of the information on this site, the WFH USA does not guarantee the information is accurate, and is not responsible in any way whatsoever for damages arising out of the use of this website or any of the information contained herein.

Messages posted to WFH USA discussion forums, Facebook, Twitter, and other social media platforms do not represent the opinions of the World Federation of Hemophilia, its staff, or Board of Directors. The author of a message is solely responsibility for its content. Information posted on WFH USA social networks and platforms should never be a substitute for individualized professional medical advice, even when the author has medical qualifications or is considered an authority. Information posted to a discussion group should not be used to diagnose or treat a specific health problem without consulting a qualified healthcare professional. The WFH USA recommends that you contact your physician or local treatment centre if you have any individual questions or concerns.

References and links to other websites or references to other organizations, products, services, or publications do not constitute endorsement or approval by the WFH USA. The WFH USA is not responsible and assumes no liability for the content of any linked websites.

Fraud alert

Unauthorized solicitations – Warning

The WFH USA has been made aware of various correspondences—circulated via e-mail and telephone—coming from individuals impersonating WFH USA staff or falsely stating that they are associated with the WFH USA. These correspondences, which may seek to obtain money using the name of someone affiliated with the WFH USA, are fraudulent and come from outside of our organization.

If you receive a suspicious solicitation, exercise extreme caution. In the case of an email, look at the email address to see if it looks suspicious (for example, all WFH USA emails come from @wfhusa.org or @wfh.org).

We are asking you to remain vigilant, and if you have any doubts about the correspondence, please forward the email to the WFH USA at [email protected] or call 1-877-417-7944.