The World Bleeding Disorders Registry (WBDR) provides a global platform for hemophilia treatment centres (HTCs) to collect standardized data on people with hemophilia. The WFH has the ambitious goal of enrolling 10,000 patients from 200 HTCs in 50 countries within the first five years—and we are happy to announce that we are on track to achieving those goals.
The first milestone was reached on January 26, 2018, with the first patient enrolled in the WBDR in Kyrgyzstan. Currently, 29 early adopter HTCs from 21 countries have enrolled over 500 patients globally. Another 90 HTCs are on their way to obtaining ethics approval.
Donna Coffin, Director, Research & Public Policy for the WFH, said this about the symbolic milestone of more than 500 patients globally in the WBDR: “It’s more than just a number. It’s proof that the program is gaining traction in the medical community. We’re very happy to be at this point now with the WBDR. Each new patient brings us close to our goal of being able to collect the kind of standardized data that will allow researchers to make a real difference.”
These two developments are encouraging, as they demonstrate that HTCs worldwide see the value in the WBDR and are actively participating. As more HTCs take part, the momentum of the WBDR’s growth will accelerate, drawing in even more HTCs to the registry, and, ultimately, bringing us to our 5-year goal. Having a robust set of data on 10,000 people with hemophilia from around the world will allow for important comparative analyses on patient outcomes.
The first-year goal of enrolling 1,000 patients from 50 countries —while certainly challenging—is within reach, and the WFH hopes that HTCs will continue coming on board to help fuel the growth of this important endeavour.
The WFH thanks our:
Visionary Partners: Shire, Sobi
Collaborating Partners: Bayer, F. Hoffman-La Roche Ltd., Grifols, Pfizer, Sanofi Genzyme