The Report on the World Federation of Hemophilia (WFH) Annual Global Survey (AGS) 2017 is now available in print and online at www.wfh.org/globalsurvey. The report includes selected worldwide demographic and treatment-related data on people with hemophilia (PWH), von Willebrand disease (VWD), other rare factor deficiencies and inherited platelet disorders. This year’s report—our 19th edition—includes data from 116 countries, representing 91% of the world population.
Over 315,000 patients were identified in the report on the Annual Global Survey 2017. This is a 6.6% increase from the number of patients identified in 2016. The report includes 196,706 people with hemophilia, 76,144 people with VWD and 42,573 people with other rare bleeding disorders.
The report presents data visually and in a way that is easy to understand. The visual representation of the humanitarian aid units added to the mean factor use per capita figures (Figures C1a to C6b, pages 12 to 23), allow for the analysis of its impact on factor levels. Additionally, 2017 was the first year that the WFH has reported units of recombinant, extended half-life products. Countries who reported these are denoted on the Figure C graphs in the report, and the specific reported values have been added to tables 16 and 17 of the report on pages 56 and 60.
The WFH continues to have immense support from its national member organizations. This year, 105 countries submitted data for the 2017 Annual Global Survey. This represents a 75% response rate—an increase from last year’s 72% response rate. Encouragingly, this year five countries contributed for the first time: Barbados, Botswana, Guyana, Mozambique and Myanmar. The WFH is thankful for the participation of all these new contributors and those countries who have supported the AGS data collection efforts over the years.
Heading towards its 20th year, the Annual Global Survey continues to be one of the most comprehensive sources of data on inherited bleeding disorders. The data is available to be used by the hemophilia community to reinforce evidence-based advocacy and care efforts as well as program planning.
Supplementary charts and graphs are available online to provide additional information about bleeding disorders.
The Report on the Annual Global Survey 2017 was developed under the supervision of the WFH Data & Demographics Committee. For more information about the Annual Global Survey, please contact [email protected].