Every three years since 2009, the European Haemophilia Consortium (EHC) has conducted surveys amongst its 45 national haemophilia member organisations to determine the extent to which the European Principles of Haemophilia Care and the EDQM/Kreuth consensus recommendations are met in countries across Europe.
The purpose of these surveys is to ascertain information about the organization of haemophilia care and treatment availability at national levels. Furthermore, the survey provides a basis from which the EHC is able to monitor the unmet need and stability of care/treatment access in the individual member countries.
The latest survey was sent out in 2015 and gathered information on factor usage for the calendar year of 2014. The questionnaire consisted of 39 questions, of which 30 questions examined to extent to which the European Principles of Haemophilia Care and the EDQM recommendations reflect the reality of haemophilia treatment and care in the countries; four questions examined cross-border access to haemophilia care; five questions examined ageing and haemophilia. The countries that responded included 23 EU member states and 14 non-EU countries.
The survey was published in the latest issue of the Haemophilia Journal. To access the article, please click here.
Results from the previous 2012 survey can be viewed here.
Information and results of all surveys done by the EHC can be accessed here.