Stock-header-8

WFH WBDR: insights from the first 10,000 patients

The World Federation of Hemophilia (WFH) World Bleeding Disorders Registry (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 hemophilia treatment centres (HTCs) to collect and manage their data. The WFH is proud to announce that we have published a manuscript titled “The World Federation of Hemophilia World Bleeding Disorders Registry: Insights from the first 10,000 patients” which contains knowledge that will shape the future of bleeding disorder care globally. This knowledge can be used by stakeholders to help their countries move further along the path to sustainable care for people with bleeding disorders.

Also available in: Français Español

The manuscript was developed by the WBDR Steering Committee, WBDR staff and participating hemophilia healthcare providers. With findings gleaned from over 10,000 patients across 40 countries, the publication is a crucial roadmap for understanding and addressing the unique challenges faced by PWH. This type of research is useful for informing evidence-based advocacy efforts, clinical practice, healthcare policies, and for improving the quality of care for people with inherited bleeding disorders.

The WBDR team expresses their sincere appreciation to all HTC teams, healthcare providers, and patients for their commitment and contributions to the WBDR. They have not only fueled this meaningful research, but have also paved the way for better understanding, advocacy, and care in the field.

To find out more, read the manuscript here. To learn more about the World Bleeding Disorders Registry (WBDR), please click here.

The WBDR’s evolution and expansion has been made possible through the collaborative efforts of visionary partners Sobi and Takeda, as well as collaborating partners including Grifols, F. Hoffman-La Roche, Pfizer, and Sanofi.

We’ve accomplished a lot this year, we need your help to continue strong.

Would you like to read more about similar articles?

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.