Updated information from the National thalassaemia major registry

Updated information from the National thalassaemia major registry was obtained in March 2010. Results show that there are 223 thalassaemia major patients in Bulgaria, who are treated in eight centres – Sofia (90), Plovdiv (54), Varna (26), Stara Zagora (23), Burgas (15), Pleven (9), Gabrovo (2). The crude prevalence for Bulgaria is 2.93/100 000 persons. The average age of the registered patients is 19.5 years. By the end of the year a process of updating and registration of new patients will be conducted too. More information about the results of the register can be found here.
The project is implemented as a result of the common work and cooperation between BAPES, ICRDOD, Medical Centre „RareDis“, Bulgarian Scientific Society of Clinical and Transfusion Hematology and regional transfusion hematology centres in Bulgaria. Its main purpose is to create an epidemiological tool for identifying and tracking each patient. The registry will help doctors, researchers and health authorities to determine prevalence, morbidity, long-term outcomes and quality of life of the Bulgarian patients with thalassaemia major. Moreover, this experience can be used as a model for creation of registries for other rare diseases.