The World Federation of Hemophilia (WFH) World Bleeding Disorders Registry (WBDR) 2020 Data Report has been published and is now available here. This third edition of the report has expanded to include data on 7,208 people with hemophilia (PWH) from 86 hemophilia treatment centres and 33 countries—representing all regions of the world. For the second year in a row, the data from the Czech Republic was integrated into the WBDR through the International Data Integration Program. This program will expand out to other countries in the upcoming year to add even more global data to the WBDR.
Inequity and disparities in hemophilia care are highlighted in this report through indicators of care, such as age at diagnosis and percentage of patients on prophylaxis. These data demonstrate that in lower income countries, PWH are diagnosed later in life compared to those in higher income countries and are less likely to have access to prophylactic treatment. These two important indicators demonstrate that care in lower income countries is lagging.
The WBDR remains the only patient registry which collects data globally and which can be used for evidence-based advocacy and also for research, as it offers real-world clinical evidence of improvements and gaps in care around the world. It is a powerful tool for improving the quality of patient care worldwide.
The WFH greatly appreciates the effort participating hemophilia treatment centres (HTCs) and PWH put towards this project, as well as the support received from our corporate partners.