Report on the Annual Global Survey 2005 includes selected demographic and other data on people with hemophilia (PWH), von Willebrand disease (vWD), other rare bleeding disorders, and platelet disorders throughout the world. The purpose of this report is to provide useful information to hemophilia organizations, hemophilia treatment centres (HTCs), and health officials involved in efforts to reduce or prevent complications of bleeding disorders in order to assist with program planning.
Methodology
In 1998, the World Federation of Hemophilia (WFH) began collecting information on hemophilia care throughout the world. This survey, called the WFH Global Survey, collects basic demographic information, data on resources of care and treatment products, and information on the prevalence (the percentage of the population affected) of infectious complications such as HIV and hepatitis C (HCV). The WFH compiled the first survey report in 1999.
Each year questionnaires are sent to national hemophilia associations linked with the WFH with the request that they in turn work with physicians or health officials, as necessary, to complete the survey.
The WFH reviews completed questionnaires for inconsistencies, which are clarified where possible by communicating directly with the participating organization.
The 2005 survey is the seventh WFH survey. It gathers data for the years 2004 and 2005. The survey includes data on more than 190,000 people with hemophilia, von Willebrand disease and other bleeding disorders in 98 countries.
Data from the WFH questionnaire are supplemented with data from other sources in order to provide a general socio-economic picture of each country surveyed.
Comments on data collection
Participation in the survey is voluntary. Although these data are self-reported, fairly consistent information on hemophilia care has been obtained from countries with similar economic capacities, validating its use for program planning. This year national hemophilia organizations have supplied more complete data than last year.
Answers are not always available for all questions. In such cases, the analysis is done using only data from countries that responded, with the number of respondents as the denominator.
Section G provides information on the use of treatment products. It includes only those countries where the national hemophilia organization provided information. Quantities reported used were not independently verified.
2005 WFH Global Survey Summary
Demographics
Number of countries in this survey: 98
Percentage of world population covered by 2005 survey: 88%
Number of people identified with hemophilia A and B (question B1) : 131,264
Number of people identified with vWD (question B2): 45,001
Number of people identified with other bleeding disorders (question B3): 16,735
Total number of people with bleeding disorders identified: 193,000
Number of people with hemophilia A (question B10): 103,086
Number of people with hemophilia B (question B11): 20,632
Number of countries using national registries to report these numbers: 49
Reported number of PWH infected with HIV: 6,762
Reported number of PWH infected with HCV: 20,113
Factor usage
(56 countries reporting)
Per capita factor VIII usage (GNP above US$10,000): 3.54 IU
Per capita factor IX usage (GNP above US$10,000): 0.60 IU
Per capita factor VIII usage (GNP between US$2000-US$10,000): 0.82 IU
Per capita factor IX usage (GNP between US$2000-US$10,000): 0.17 IU
Per capita factor VIII usage (GNP below US$2,000): 0.02 IU
Per capita factor IX usage (GNP below US$2,000): 0.002 IU
Total reported consumption of factor VIII concentrates: 2,356,498,054 IU
Total reported consumption of factor IX concentrates: 428,439,368 IU
The WFH welcomes suggestions to improve the quality of the survey and the data. Please send comments to mbrooker@wfh.org .
To order a print version of the entire Report on the Global Survey 2005, which includes comparative data on people with hemophilia and von Willebrand disease in each country that participated in the survey, click on price list & order form.
Last Updated October 2006
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