A systematic review of studies that estimated the burden of chronic non-communicable rare diseases using disability-adjusted life years.

ABSTRACT:

Background

Initiatives aiming to assess the impact of rare diseases on population health might be hampered due to the complexity of disability-adjusted life years (DALYs) estimation. This study aimed to give insight into the epidemiological data sources and methodological approaches used in studies that estimated DALYs for chronic non-communicable rare diseases (CNCRD), and compare its results.

Methods

A literature strategy was developed for peer-review search in Embase and Medline, and also performed on grey literature databases and population health and/or rare disease-focused websites. We included studies that determined the burden of CNCRD listed on the Orphanet's and/or the Genetic and Rare Diseases information center (GARD) websites. We excluded communicable and occupa

SUBMITTER: Oliveira CC 

PROVIDER: S-EPMC11384705 | biostudies-literature | 2024 Sep

REPOSITORIES: biostudies-literature