Population Registries of Non-Communicable Diseases in the Russian Federation

Abstract

Population registries consolidate information about cases of disease among the geographically limited population at the national, regional or municipal levels. The main tasks of registries are to monitor the levels of prevalence, to study risk factors, and to evaluate effectiveness of therapeutic or preventive measures. Currently, in the Russian Federation there is a lot of federal registries of various such diseases, like diabetes, cancer, congenital malformations, chronic skin diseases, cardiovascular diseases, bronchial asthma, orphan diseases, and others. These registries allow obtaining the necessary information about the prevalence, clinical course of disease, its complications, associated conditions, socio-demographic characteristics of patients, effect of a particular treatment on the course and outcomes of the disease.The article provides information about cancer registry, county birth registry and injury registry in the Arkhangelsk region. The advantages and limitations of population registries for epidemiological studies are given. Using registries in epidemiological studies is based on complete data collection, saving resources, taking into account confounding factors that are accessible to entire population. Register-based research has a large sample size, which makes it possible to study rare exposures and outcomes. The long collection of information in time allows studying diseases with a long latent period after exposure. The limitations of the registry data for epidemiological study include the fact that data is collected by the registrar and not by the researcher. The registries don’t contain information about specific confounding factors, which doesn’t allow correcting them. It is difficult to assess quality of registry data, as there is no “gold standard” for the comparement with the registry database The exchange of data between registries should be promising, as it will combine efforts to achieve common scientific and organizational goals.