Following the success of the World Federation of Hemophilia (WFH) World Bleeding Disorders Registry (WBDR) pilot study—and with funding confirmed—the WFH is launching the full scale WBDR!
The WBDR is an online web-based data entry system that will provide a platform for a network of hemophilia treatment centres (HTCs) around the world to collect uniform and standardized patient data and guide clinical practice. As a global organization with access to a network of 134 national member organizations (NMO), more than 1,000 HTCs, and numerous patients in countries with varying levels of access to care, the WFH is uniquely positioned to develop such a registry. The WBDR represents a new era in the worldwide care of people with hemophilia. Having an easily accessible patient registry strengthens our capacity to diagnose, treat, and live with hemophilia.
This registry is intended to collect real world data on the patient clinical experience around the globe, allowing researchers to generate evidence, build advocacy initiatives and improve the quality of care worldwide. Only through a robust and global registry can we generate enough data to answer important clinical questions on the quality and access to care for all people with hemophilia.
The implementation of Phase I of the WBDR will roll out gradually in countries around the world starting in late 2017. If participation in the WBDR is of interest to your HTC or to your country, please contact us at firstname.lastname@example.org.
The WFH thanks the following partners for their valuable support of the WBDR:
F. Hoffman-La Roche Ltd.