Проекти
Description:
А pilot epidemiological study of morbidity and incidence of chronic myeloid leukemia (CML) in Bulgaria has been completed. For the period of the study, information was gathered about 227 patients, 22 of them died. At the end of the survey (30/06/2009) there are 205 patients with CML, who are treated in the National specialized hospital for hematology and all University Hospitals in Bulgaria. The pilot study was organized and conducted in close collaboration between ICRDOD, Scientific Society of Clinical and Transfusion Hematology and Medical Center “RareDis”.
Contacts:
Help Line: (+359-32) 57 57 97
E-mail: info@raredis.org
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Last modification: 10:29 04.12.2009
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A meeting of the work group on the project “National registry of patients with thalassemia major in Bulgaria” was held on 30 January 2009. It was attended by medical experts and representatives of thalassaemia patient associations in Bulgaria. Among the topics of the event were the results achieved by the project so far and the main activities for 2009.
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Last modification: 10:29 03.12.2009
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Description:
The Bulgarian Association for Promotion of Education and Science (BAPES) conducted a pilot study of the socio-demographic characteristics of the patients with epilepsy and the ongoing therapy and prevention by their doctors. In this research, patients with epilepsy as well as general practitioners from the town of Plovdiv and the disrtict participated. For the purpose of this study, a specialized questionnaire had been developed, which contained two parts – for a patient and doctor. By this pilot survey, the necessary information for planning, organizing and conducting of a representative survey on patients with epilepsy in Bulgaria was collected.
Contacts:
Help Line: (+359-32) 57 57 97
E-mail: info@raredis.org
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Last modification: 10:50 05.09.2008
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Project Duration – 01.04.2008 –
01.04.2011 (36 months)
10 Partners
Istituto Superiore di Sanità (ISS). National Centre for Rare Diseases (CNMR)
The Netherlands Organisation for Health Research and Development (ZonMw)
Instituto de Salud Carlos III (ISCIII)
Karolinska Institute (KI)
London strategic health authority
University of Tartu (UT)
European Organisation for Rare Diseases (EURORDIS)
Bulgarian Association for Promotion of Education and Science (BAPES)
Fundacion Canaria de Investigacion y Salud (FUNCIS)
Mario Negri Institute for Pharmacological Research (IRFMN)