WFH NETWORK

WBDR hits 1,000 patient milestone

The World Federation of Hemophilia (WFH) is happy to announce that on November 28th, 2018 the World Bleeding Disorders Registry (WBDR) reached an important milestone: the 1,000th patient was enrolled in the registry!

Since its launch on January 26, 2018, a growing group of hemophilia treatment centres (HTCs) have led the way, propelling the registry to meet and exceed its 2018 patient enrolment goal. Currently, 40 HTCs from 27 countries have obtained ethics approval to participate in the registry and are enrolling patients. The registry has representation from varying levels of care and all regions worldwide.

“The WBDR is a simple way to collect important and standardized patient data globally.”
– Timur Narbekov, MD, from the National Center of Oncology and Hematology

 

“The WFH WBDR is a strategic tool for improving the understanding of hemophilia and, accordingly, improving the quality of medical care for patients with hemophilia worldwide. This registry contains the most important aspects and indicators required for the evaluation and monitoring of treatment, prevention and rehabilitation assistance for patients with hemophilia. It is a simple way to collect important and standardized patient data globally. I feel that this registry can serve as a model for countries to create their own registry, if they don’t already have one.” said Timur Narbekov, MD, from the National Center of Oncology and Hematology in the Kyrgyz Republic. His centre is one of the leading HTCs involved in the WBDR—and the centre that enrolled the very first patient in the registry on January 26, 2018.

To find out more about the WBDR, please click here.
To follow the progress of the WBDR, please click here.

The WFH thanks our:
Visionary Partners: Shire, Sobi
Collaborating Partners: Bayer, F. Hoffman-La Roche Ltd., Grifols, Pfizer, Sanofi Genzyme