Overview of epidemiological registries in Bulgaria

Abstract

Background: Understanding the importance of collecting epidemiological data Bulgarian association for promotion of education and science was motivated to start an important initiative in 2008, namely tracing the way for establishing a rare disease epidemiological registry in Bulgaria. This initiative was in conformity with one of the basic aims of the Bulgarian National program for development in the field of rare diseases. Till now several private initiatives on rare diseases registries have been realized in the country resulting in excellent-working databases. This is a costless experience that could be shared in order to support the design, implementation, analysis, interpretation and quality evaluation.

Aim: The aim of this study was to provide up-to-date and reliable information on the epidemiological registries for rare diseases officially processing in Bulgaria.

Study design: The authors did a systematic review of the available data from the existing registries for rare diseases in the country.

Material and methods: For originating the rare diseases epidemiological registries report several sequential strategies were used. The inquiry contained the following summary indicators: 1) year of launch; 2) year of latest update; 3) number of patients from latest update; 4) distribution by sex; 5) distribution by age. Also the main features of rare diseases registries were described.

Results: Consent forms and date information were provided by 14 rare diseases registries.

Conclusion: The benefits of rare diseases registries are many and they stimulate all Bulgarian stakeholders to continue to give their best to support the management of the epidemiological rare diseases registries in the country.