Russian register of patients suffering from chronic skin diseases

Кубанов, А. А.; Almazova, Anna A.; Bogdanova, Ye. V.; Богданова, Е. В.

doi:10.25208/0042-4609-2015-91-3-16-20

Vestnik dermatologii i venerologii

2015

DOI: 10.25208/0042-4609-2015-91-3-16-20

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Russian register of patients suffering from chronic skin diseases

А. А. Кубанов

Anna A. Almazova

Ye. V. Bogdanova

et al.

Abstract: The article provides a review of regulatory documents providing for the establishment of a universal governmental healthcare information system in the Russian Federation, describes the key goals and tasks for the register of patients with chronic skin disorders and characterizes different types of registries and their use.

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Cystic Fibrosis Patient Registries: Domestic and Foreign Experience

Andreev¹,

Bashlakova²,

Хачанова³

et al. 2017

Pediatr. farmakol.

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Cystic fibrosis is a multi-organ genetic disease that reduces life expectancy and requires costly complex therapy. The economic burden of cystic fibrosis is determined by the cost of treatment, the conditions for optimizing medical technologies based on epidemiological knowledge of the disease course nature and the therapy effectiveness. In many countries cystic fibrosis patient registries have been created that allow to assess the quality, efficiency and optimality of medical care. Registries are formed at the regional, national, and international levels, which facilitates the collection of complete and reliable patient information for subsequent analysis, comparison and synthesis of clinical and epidemiological indicators. The review is devoted to the actual principles of organization of domestic and some foreign cystic fibrosis patient registries. The article selectively provides examples of information from registries. The application of positive experience of the work of foreign registries in Russia can improve the quality of medical care for patients with cystic fibrosis.

show abstract

Cystic Fibrosis Patient Registries: Domestic and Foreign Experience

Andreev¹,

Bashlakova²,

Хачанова³

et al. 2017

Pediatr. farmakol.

View full text Add to dashboard Cite

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Population Registries of Non-Communicable Diseases in the Russian Federation

Unguryanu

2019

HAS

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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.

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Russian register of patients suffering from chronic skin diseases

Cited by 2 publications

References 1 publication

Cystic Fibrosis Patient Registries: Domestic and Foreign Experience

Cystic Fibrosis Patient Registries: Domestic and Foreign Experience

Population Registries of Non-Communicable Diseases in the Russian Federation

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