Every year, national aggregate data is collected from World Federation of Hemophilia (WFH) national member organizations (NMOs) and published in the Report on the WFH Annual Global Survey, the most comprehensive source of data on people with inherited bleeding disorders.
When the first report was developed in 1999, 65 NMOs contributed data. The latest report for 2014 now includes data from 106 countries, representing 91 per cent of the world population. The growth of the WFH Annual Global Survey continues and we can provide an improved overview of patient identification and access to care.
The Afghanistan Hemophilia Association (AHA) was established in 2011 and became a member of the WFH in July 2012. The AHA has steadfastly improved their data collection efforts and in 2014 they were able to submit their survey data for the first time. Their efforts proved successful, with the identification of 288 people with hemophilia A, B, or type unknown.
Dr. Khalilullah Hamdard, AHA president, noted that patients come from all over Afghanistan to be registered, diagnosed, and treated at the centre in Kabul. This data is also used to advocate for an improved level of hemophilia care in Afghanistan and increase the understanding of the complexities involved for the entire comprehensive care team within the country.
Submitting quality data requires continuous effort. From first-time submissions, to annual contributions to the WFH Annual Global Survey, there are many steps to improving data collection. Quality data is based on accuracy, completeness, and consistency. We are working in collaboration with all WFH NMOs to ensure that each year the WFH Annual Global Survey will provide the most valuable data to the global community.
For more information on data collection, please visit here.