20-year progress and findings of WFH Annual Global Survey published in Haemophilia

The World Federation of Hemophilia (WFH) Annual Global Survey (AGS) was launched to standardize the collection of data on the global bleeding disorder population. The survey has collected comprehensive demographic and treatment data on bleeding disorders for more than 20 years. The AGS has helped to identify and characterize people with inherited bleeding disorders and has been an invaluable evidence-based decision-making tool for improving care for the community. The AGS has also been an integral part of WFH research activities.

The World Federation of Hemophilia Annual Global Survey 1999-2018, which covers the historical developments and progress of the AGS over the last two decades, was recently published in Haemophilia, the official journal of the WFH. This publication, led by Jeff Stonebraker—the chair of the WFH Data and Demographics committee—highlights the increase in number of patients identified around the world over the last 20 years, as well as the improvements in care.

The survey is sent to all WFH national member organizations (NMOs) each year. Of the 140 NMOs that were active in 2018, 125 responded to the survey, which is an immense improvement from the 65 countries that contributed to the first survey in 1999. The survey also demonstrated a rise in number of patients identified (from 111,203 to 337,641) and the factor concentrate usage per capita (FVIII per capita increased from 0.79 to 2.91 IU and FIX per capita increased from 0.19 to 0.55 IU).

However, the analysis brings to light the gap in treatment across countries with different income levels around the globe. The increase in factor concentrates has been higher in high income and upper-middle income countries, and it was observed that these countries use 94% of the total IUs of FVIII globally, despite comprising only 51% of the population.

The AGS continues to evolve in responding to the changing landscape of hemophilia care. To read the article in Haemophilia, please click here. To learn more about the history of the AGS, its benefits for research and program planning and the future developments, please click here.