The WBDR is global database of high-quality, real-world data on over 11,000 people with hemophilia (PWH). To date, the WBDR remains the only global registry that collects standardized clinical data on PWH. By bringing multi-lingual functionality to the WBDR, hemophilia treatment centres (HTCs) in Spanish-, French- and Russian-speaking countries will be able to use the platform in their own language.
This new functionality will have a major impact on the everyday user-friendliness of the platform. Here are what some users are saying about this exciting development:
Being able to use the WBDR in one’s own language will make it more user-friendly. It will also increase the number of users and it will allow for more accurate and detailed data to be integrated. Finally, removing the language barrier could encourage some centres to join the register.
—Catherine Lambert, HTC Cliniques Universitaires Saint-Luc, Woluwe-Saint-Lambert, Belgium
Accessing the register in your mother tongue has many advantages: it speeds up information entry, avoids misinterpretation, and increases confidence in the data. I am sure that people value very much this effort to make a multilingual interface.
—Daniela Neme, Fundación de la Hemofilia and Instituto De Investigaciones Hematológicas Dr. Mariano R. Castex, Buenos Aires, Argentina
We see this as an opportunity to improve clinical care for people with hemophilia in Kyrgyzstan because language will not be a barrier to use anymore. Providing additional languages on the platform makes the WBDR a truly international registry.
—Timur Narbekov, National Center of Oncology and Hematology, Bishkek, Kyrgyzstan
The fact that the WBDR platform is multilingual is a demonstration to all members of our community that the WFH is seeking to improve the lives of all our patients and their families, regardless of sex, religion, culture and where they live. The language barrier has always hindered or minimized fluid and understandable communication. By offering new languages, we are making sure that WBDR is a truly global initiative.
—Cesar Garrido, President, WFH
The WFH would like to thank all PWH and their caregivers, HTC staff, national member organizations, and volunteers for continuing support the WBDR as a key global resource for advocacy, research, and empowerment of PWH. To find out more about the WBDR, click here. If your HTC would like to join the WBDR, please contact us at [email protected].