Quality of haemophilia treatment in Serbia: National Haemophilia Registry Report.

INTRODUCTION: The National Registry of patients with inherited bleeding disorders was established in 1963 and ever since it has been in charge of the Haemophilia Centre, Blood Transfusion Institute of Serbia, Belgrade.

OBJECTIVE: Purpose was to assess the quality of haemophilia treatment in Serbia from 2000 to 2008 based on the National Registry data related with the organization of care and quantities, and the choice of products.

METHODS: Analysis of data collected by the National Registry from January 2000 to December 2008.

RESULTS: The National Registry of patients with hereditary coagulopathy encompasses a database of 392 patients with haemophilia A (HA), 64 haemophilia B (HB), 217 von Willebrand's disease and 19 with rare bleeding disorders. Treatment can be obtained in seven haemophilia treatment centres; haematological and paediatric institutes and hospitals in Belgrade, Nis and Novi Sad, as well as in other twenty local hospitals. From 2000 to 2003 about three million units of FVIII concentrate were administered annually, e.g. 0.25 IU/capita/year. Besides, national cryoprecipitate was available for the treatment. In 2003, National Haemophilia Committee was founded and centralized products supply was introduced. During 2004 and 2005, about five million units of FVIII concentrate were provided: annually, i.e. 0.65 IU/capita/ year. The choice of products was also improved. Namely, until 2004 the availability of DDAVP, antifibrinolytic drugs and rFVIIa concentrate was limited, while from 2004 these products became available for haemophilia treatment in Serbia. In order to improve haemophilia care we established international cooperation; education, training, consulting and participation in clinical and research projects. As the result, FVIII concentrate consumption in 2008 was 10.5 million units, e.g. 1.35 IU/capita/year.

CONCLUSION: The considerable improvement of treatment is the result of efforts made by health care and regulatory institutions in Serbia. Significant support has been provided by cooperation within twinning programmes between Stockholm and Belgrade Haemophilia Centres in 2003-2004 and Hamilton and Belgrade Haemophilia Centres in 2005-2008.