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.

Did you know?

The WFH Humanitarian Aid Program improves the lack of access to care and treatment by providing much-needed support to NMOs, HTCs, and HCPs in emerging countries.

Disclaimer

The information on the WFH website is provided for general information purposes only. The WFH 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 recommends that you contact your physician or local treatment centre. Before administering any products, the WFH 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 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 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 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 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. The WFH is not responsible and assumes no liability for the content of any linked websites.

Fraud Alert

Unauthorized solicitations – Warning

The WFH has been made aware of various correspondences—circulated via e-mail and telephone—coming from individuals impersonating WFH staff or falsely stating that they are associated with the WFH. These correspondences, which may seek to obtain money using the name of someone affiliated with the WFH, 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 emails come from @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 at [email protected] or call +1 514-875-7944.