The Report on the World Federation of Hemophilia (WFH) Annual Global Survey (AGS) 2019 is now available online. The report includes global demographic and treatment-related data on people with hemophilia (PWH), von Willebrand disease (VWD), other rare factor deficiencies, and inherited platelet disorders.
The national member organizations (NMOs) who contributed to the report faced many data collection challenges due to the COVID-19 pandemic. However, this year’s survey nevertheless had a high response rate of 82% and includes data from 115 countries, with Trinidad and Tobago and Kuwait as our newest respondents to be included in the survey.
The report includes data on over 324,000 patients: 195,263 people with hemophilia (PWH), 80,302 people with VWD, and 49,083 people with other rare bleeding disorders.
The median factor VIII and factor IX use per capita were calculated to be 1.058 and 0.155 IU respectively.
This year the report also includes a new analysis illustrating the global inequities in diagnosis and patient identification. Using the new prevalence of hemophilia, the number of expected PWH for each country and region was calculated—making the report even more comprehensive than ever. The data are available for the hemophilia community to reinforce the importance of early diagnosis.
The AGS continues to improve and remains as one of the key resources for the bleeding disorders community. The use of this data can lead to better research, advocacy and policy-making decisions globally. The WFH is thankful for the participation and support of all countries who have continuously supported our data collection efforts.
To access the WFH Annual Global Survey (AGS) 2019 please click here. Supplementary charts and graphs are available online to provide more information about bleeding disorders. For more information about the Annual Global Survey, please contact [email protected].