Cystic Fibrosis Patient Registries: Domestic and Foreign Experience
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 cours...
Saved in:
| Main Authors: | , , , |
|---|---|
| Format: | Article |
| Language: | Russian |
| Published: |
Union of pediatricians of Russia
2017-08-01
|
| Series: | Педиатрическая фармакология |
| Subjects: | |
| Online Access: | https://www.pedpharma.ru/jour/article/view/1512 |
| Tags: |
Add Tag
No Tags, Be the first to tag this record!
|
| _version_ | 1850047003809021952 |
|---|---|
| author | Dmitry A. Andreev Ekaterina E. Bashlakova Natalia V. Khachanova Maria V. Davydovskaia |
| author_facet | Dmitry A. Andreev Ekaterina E. Bashlakova Natalia V. Khachanova Maria V. Davydovskaia |
| author_sort | Dmitry A. Andreev |
| collection | DOAJ |
| description | 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. |
| format | Article |
| id | doaj-art-37fa6e5dd88b4408b8371f1337eea55f |
| institution | DOAJ |
| issn | 1727-5776 2500-3089 |
| language | Russian |
| publishDate | 2017-08-01 |
| publisher | Union of pediatricians of Russia |
| record_format | Article |
| series | Педиатрическая фармакология |
| spelling | doaj-art-37fa6e5dd88b4408b8371f1337eea55f2025-08-20T02:54:19ZrusUnion of pediatricians of RussiaПедиатрическая фармакология1727-57762500-30892017-08-0114211512610.15690/pf.v14i2.17261484Cystic Fibrosis Patient Registries: Domestic and Foreign ExperienceDmitry A. Andreev0Ekaterina E. Bashlakova1Natalia V. Khachanova2Maria V. Davydovskaia3State-Financed Institution «Center for Clinical Research and Evaluation of Medical Technologies of the Moscow City Health Department»State-Financed Institution «Center for Clinical Research and Evaluation of Medical Technologies of the Moscow City Health Department»State-Financed Institution «Center for Clinical Research and Evaluation of Medical Technologies of the Moscow City Health Department»State-Financed Institution «Center for Clinical Research and Evaluation of Medical Technologies of the Moscow City Health Department»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.https://www.pedpharma.ru/jour/article/view/1512cystic fibrosisregistriesoptimization of medical carerare diseaseshigh-cost nosologies |
| spellingShingle | Dmitry A. Andreev Ekaterina E. Bashlakova Natalia V. Khachanova Maria V. Davydovskaia Cystic Fibrosis Patient Registries: Domestic and Foreign Experience Педиатрическая фармакология cystic fibrosis registries optimization of medical care rare diseases high-cost nosologies |
| title | Cystic Fibrosis Patient Registries: Domestic and Foreign Experience |
| title_full | Cystic Fibrosis Patient Registries: Domestic and Foreign Experience |
| title_fullStr | Cystic Fibrosis Patient Registries: Domestic and Foreign Experience |
| title_full_unstemmed | Cystic Fibrosis Patient Registries: Domestic and Foreign Experience |
| title_short | Cystic Fibrosis Patient Registries: Domestic and Foreign Experience |
| title_sort | cystic fibrosis patient registries domestic and foreign experience |
| topic | cystic fibrosis registries optimization of medical care rare diseases high-cost nosologies |
| url | https://www.pedpharma.ru/jour/article/view/1512 |
| work_keys_str_mv | AT dmitryaandreev cysticfibrosispatientregistriesdomesticandforeignexperience AT ekaterinaebashlakova cysticfibrosispatientregistriesdomesticandforeignexperience AT nataliavkhachanova cysticfibrosispatientregistriesdomesticandforeignexperience AT mariavdavydovskaia cysticfibrosispatientregistriesdomesticandforeignexperience |