The WFH WBDR 2023 Data Report features the first year of reporting on people with von Willebrand’s disease (VWD). Data collection on people with VWD started in February 2023, and as of December 31, 2023, there were 999 people with VWD from 45 HTCs in 22 countries enrolled in the WBDR.
The WBDR remains the only global registry for PWH, and now it has become the only global registry for people with VWD (PwVWD). The WBDR Research Support Program and the WBDR HTC Funding Program—both integral parts of the WBDR—continue to provide valuable aid in data collection activities and research initiatives. Notably, since 2018, 46 research projects across 24 countries have been funded. Furthermore, in 2023 alone, the HTC Funding Program supported 20 HTCs in 12 countries to further enhance data collection capacity.
Through extensive data collection efforts by HTCs, the WBDR continues to support research and advocacy initiatives globally. The standardized data collected has facilitated evidence-based decision making, to help understand gaps in treatment and improve hemophilia care. The 2023 report highlights discrepancies in care between patients in low income countries when compared to those in high income countries, as well as regionally. In Africa and Southeast Asia, the median age at diagnosis for severe PWH is 45 and 30 months respectively, whereas in the Americas and Europe, the figures are 8 and 11 months, respectively. The WBDR data show that the annual bleed rate (ABR) for those in low-income countries is six compared to three in high income countries—indicating clear gaps in care.
Among the 999 PwVWD enrolled in the WBDR, 56% were female and 55% were diagnosed with Type 3 VWD. As we progress, leveraging this real-world evidence will be instrumental in informing VWD care and policy development, ensuring equitable treatment for all individuals.
The WFH greatly appreciates the contributions of participating HTCs, PWH and PwVWD in making the WBDR a success. To find out more about the World Bleeding Disorders Registry (WBDR), click here. To read the WBDR 2023 Data Report, click here.
The WBDR is made possible by the support of our visionary partners Sobi and Takeda, and our collaborating partners Grifols, F. Hoffman-La Roche, Pfizer and Sanofi