Evaluation of orphan diseases global burden
Orphan diseases is a significant socio-economic burden for both global and Russian health care systems. The global burden of disease metrics introduced by WHO, such as DALY, QALY, HALE, can be a useful tool for building economic models and prognoses, as well as medicine funding distribution. Howeve...
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doaj-3fb770f4c9b549f7a99f10d08092e8002021-05-14T21:13:00ZengPAGEPress PublicationsEuropean Journal of Translational Myology2037-74522037-74602021-05-0110.4081/ejtm.2021.9610Evaluation of orphan diseases global burdenEkaterina V Makarova0Ivan S Krysanov1Tatiana P Valilyeva2Mikhail D Vasiliev3Rena A Zinchenko4National Research Institute of Public Health n.a. N.А. Semashko, MoscowNational Research Institute of Public Health n.a. N.А. Semashko, MoscowNational Research Institute of Public Health n.a. N.А. Semashko, MoscowNational Research Institute of Public Health n.a. N.А. Semashko, MoscowResearch Centre for Medical Genetics n.a. acad. N.P. Bochkov, Moscow Orphan diseases is a significant socio-economic burden for both global and Russian health care systems. The global burden of disease metrics introduced by WHO, such as DALY, QALY, HALE, can be a useful tool for building economic models and prognoses, as well as medicine funding distribution. However, it is very difficult to standardize a heterogeneous group of rare diseases and it is difficult to talk about the cost-effective treatment options search, in cases where patients with an orphan disease may have only one pathogenetic therapy option. Much work needs to be done to find optimal treatment options and establish the standards of care necessary to maintain physical health, work capacity and quality of life. https://pagepressjournals.org/index.php/bam/article/view/9610Orphan diseasesrare diseasesglobal disease timedisabilityquality of lifeDALY |
collection |
DOAJ |
language |
English |
format |
Article |
sources |
DOAJ |
author |
Ekaterina V Makarova Ivan S Krysanov Tatiana P Valilyeva Mikhail D Vasiliev Rena A Zinchenko |
spellingShingle |
Ekaterina V Makarova Ivan S Krysanov Tatiana P Valilyeva Mikhail D Vasiliev Rena A Zinchenko Evaluation of orphan diseases global burden European Journal of Translational Myology Orphan diseases rare diseases global disease time disability quality of life DALY |
author_facet |
Ekaterina V Makarova Ivan S Krysanov Tatiana P Valilyeva Mikhail D Vasiliev Rena A Zinchenko |
author_sort |
Ekaterina V Makarova |
title |
Evaluation of orphan diseases global burden |
title_short |
Evaluation of orphan diseases global burden |
title_full |
Evaluation of orphan diseases global burden |
title_fullStr |
Evaluation of orphan diseases global burden |
title_full_unstemmed |
Evaluation of orphan diseases global burden |
title_sort |
evaluation of orphan diseases global burden |
publisher |
PAGEPress Publications |
series |
European Journal of Translational Myology |
issn |
2037-7452 2037-7460 |
publishDate |
2021-05-01 |
description |
Orphan diseases is a significant socio-economic burden for both global and Russian health care systems. The global burden of disease metrics introduced by WHO, such as DALY, QALY, HALE, can be a useful tool for building economic models and prognoses, as well as medicine funding distribution. However, it is very difficult to standardize a heterogeneous group of rare diseases and it is difficult to talk about the cost-effective treatment options search, in cases where patients with an orphan disease may have only one pathogenetic therapy option. Much work needs to be done to find optimal treatment options and establish the standards of care necessary to maintain physical health, work capacity and quality of life.
|
topic |
Orphan diseases rare diseases global disease time disability quality of life DALY |
url |
https://pagepressjournals.org/index.php/bam/article/view/9610 |
work_keys_str_mv |
AT ekaterinavmakarova evaluationoforphandiseasesglobalburden AT ivanskrysanov evaluationoforphandiseasesglobalburden AT tatianapvalilyeva evaluationoforphandiseasesglobalburden AT mikhaildvasiliev evaluationoforphandiseasesglobalburden AT renaazinchenko evaluationoforphandiseasesglobalburden |
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1721440822000353280 |