Description:
National registry of patients with thalassаemia major in Bulgaria is a project in the field of rare diseases which BAPES started in August 2008. Its aim is to establish an epidemiological tool to identify and follow up regularly the medical history of each patient. The registry will help doctors, scientists and health authorities to determine the incidence, prevalence, long-term clinical outcome and quality of life of Bulgarian patients with thalassаemia major. They will also be able to compare overall management of thalassаemia patients in Bulgaria with other countries. Moreover, this experience could be used as a model for starting registries for other rare diseases in the country.
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.
Milestones
_____Information at the beginning of the project (August 2008)
_____Certification of BAPES as personal data administrator by the State Agency for Data Privacy Protection (October 2009)
_____Preliminary results (January 2010)
_____Actual results (April 2010)
Contacts:
Help Line: (+359-32) 57 57 97
E-mail: miteva@raredis.org
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Last modification: 11:29 17.06.2010
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