The Report on the World Federation of Hemophilia (WFH) Annual Global Survey 2016 is now available in print and online at www.wfh.org/globalsurvey. The report includes selected demographic and treatment-related data on people throughout the world with hemophilia (PWH), von Willebrand disease (VWD), other rare factor deficiencies, and inherited platelet disorders.
The Report on the Annual Global Survey 2016 represents data on over 290,000 people with bleeding disorders: 184,723 people with hemophilia, 71,648 people with VWD, and 39,495 people with rare bleeding disorders.
The mean per capita factor-use figures—which compare data across regions and gross national incomes (GNIs)—were revamped this year (see Figures C1a to C6b, pages 14 to 25 from the Annual Global Survey 2016). The factor VIII and factor IX figures have been separated to provide a more in-depth perspective of factor consumption. The figures now also include a visual representation of humanitarian aid and the presence of donated factor.
Table 4, on page 11, compares factor use for the 67 countries that reported in both the 2015 and 2016 surveys. There has been a tremendous growth in the median global per capita factor VIII usage: in 2015 the median was 0.53 IU, and this increased to 1.05 IU in 2016.
There was a record number of WFH national member organizations (NMOs) who submitted a 2016 Annual Global Survey. Ninety-seven countries contributed 2016 data, which is a 72% response rate (97 of 134 NMOs responded). From first time contributors (Burkina Faso, Malawi, Mali, and Madagascar), to long-time supporters (for example, Venezuela, who has submitted for 18 consecutive years), the WFH is thankful for the participation and support.
The Annual Global Survey continues to be one of the most comprehensive sources of data on inherited bleeding disorders. The data is available to the community to reinforce evidence-based advocacy efforts and program planning. The Report on the Annual Global Survey 2016 was developed under the supervision of the WFH Data & Demographics Committee.
For more information about the Annual Global Survey, please contact [email protected].