The World Bleeding Disorders Registry (WBDR) remains the only global registry for PWH, and it continues to support research and advocacy initiatives globally. The standardized data collected has been used for evidence-based decision making, to help understand the nature of gaps in treatment, and to improve hemophilia care. This year, we continue to see discrepancies in diagnosis and treatment between regions and between economic categories. There is a large gap in the median age at diagnosis for severe patients in high income countries when compared to those in low-income countries. The WBDR data show that only 30% of adults and 32% of children with severe hemophilia received prophylaxis in 2022; these figures are even lower for those in low and lower-middle income countries. The data also show that 20% of adults with severe hemophilia report that their employment status is negatively affected as a result of their diagnosis. This real-world evidence can be used to inform hemophilia care and policy development for ensuring equitable Treatment for All.
The WBDR continues to expand, and, in 2022, the platform became available in French, Spanish and Russian to increase its usability globally. Last year also saw the launch of the myWBDR mobile application, which allows patients to monitor their care, by tracking their bleeds and treatments, as well as their quality of life and burden of disease through the Patient Reported Outcomes Burdens and Experiences (PROBE) questionnaire. The app can also be used by patients to share their records with their healthcare provider.
In 2023, the WBDR started collecting data on people with von Willebrand disease (VWD). With continued support from participating hemophilia treatment centres (HTCs), we hope to advance care in people not only with hemophilia but with VWD as well.
The WBDR is supported by Sobi and Takeda our Visionary Partners and Grifols, F. Hoffman-La Roche, Pfizer and Sanofi our Collaborating Partners.