Whatever the treatment strategy used, haemophilia care requires intensive, life-long treatment. This treatment is, by definition, multidisciplinary, involving nurses, physiotherapists and social workers as well as

a haemophilia physicians/haematologists, surgeons Lumacaftor cell line and specialists in rehabilitation/other relevant medical personnel. The delivery of high-quality haemophilia care requires skill and experience from diagnosis onwards throughout life. The management of the child with haemophilia is particularly important, as it has been established that the intensity of treatment at a young age is an important determinant of outcome in adulthood [1, 2]. Moreover, it has been demonstrated that the life expectancy of patients with haemophilia is dependent on specialized care in developing countries [3] and also in the western world [4, 5]. Optimal standards of care will for some countries be an index of those standards that should be maintained, Gefitinib datasheet but in other places will be a goal to be achieved. To establish these standards, the Principles of Haemophilia Care were agreed in 2008 by an expert group of haemophilia treaters and published in Haemophilia by Colvin and colleagues [6]. The Principles are summarized in Table 1. The European Haemophilia Therapy Standardisation Board (EHTSB) consists of a group of 25 haemophilia

treaters from 14 European countries who meet on a regular basis (two to three times per year) to review and asses the current trends in haemophilia treatment with a view to standardizing care and disseminating best

practice across Europe. The study presented here was conducted by the EHTSB with the aim of assessing the current standard of services for haemophilia across Europe including the extent of adherence to the Principles of Haemophilia Care. Using a template derived from the audit tool designed by the UKHCDO (UK Haemophilia Care Doctors’ Organisation) and the published MCE Principles of Haemophilia Care, a working group of the EHTSB developed a questionnaire (Appendix 1), which was sent out to the members of all centres in the EHTSB in December 2009. After analysis and discussion of the results, additional questions to address queries concerning some items were sent out in November 2010 and March 2011. In the questionnaire the definitions of comprehensive care centres (CCC) and haemophilia treatment centres (HTC) according to those of the UKHCDO were used as shown in Table Principles of care audit questionnaire 2009. Descriptive statistics were used to calculate results according to each of the 10 principles. To calculate the number of treatment centres per million inhabitants, the number of HTCs reported by the physicians was checked at the Global Treatment Centre Directory on the WFH website (http://www.wfh.org/index.asp?lang=EN accessed May 8 2012) and divided by the population size for each country.