The WBDR Data Dashboard is now live

The WBDR Data Dashboard is now live

The World Bleeding Disorders Registry (WBDR) is a global data collection platform which has been collecting standardized, patient-level data from hemophilia treatment centers (HTCs) worldwide since 2018. These data provide valuable insights into treatment practices and patient outcomes for people with hemophilia and von Willebrand disease (VWD), with an aim to support evidence-based decision making, improve clinical practices, and strengthen research and advocacy efforts. To further these goals, the WFH has now developed a WBDR Data Dashboard, which transforms the data into useful metrics and insights that can be leveraged for a wide range of purposes, such as advocacy and research.

Also available in: Français Español

The WBDR Data Dashboard provides users with real-time insights into key metrics such as patient demographics and clinical outcomes. The tool allows HTCs, healthcare professionals, and researchers to analyze trends and disparities in diagnosis, treatment and care, with the goal of informing patient outcomes, resource allocation and health policies.

Data can be filtered by several fields, such as hemophilia type, severity, age group, region and country.  Visualizations can then be presented as a demographic summary, a demographic visualization, a map, a clinical summary, or a diagnosis, outcomes, or treatment visualization. The figures below show two possible data outputs, with the filters on the right.

WBDR Data Dashboard demographic summary visualization
Demographic summary visualization
WBDR Data Dashboard map summary visualization
Map summary visualization

By making the WBDR data more accessible, the WFH hopes to highlight the importance of this data collection initiative and its critical role in positively impacting the bleeding disorders community and improving care for people with hemophilia and VWD.

To access the WBDR Data Dashboard, click here.

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.