National Rare Diseases Registry System (NRDRS): China's first nation-wide rare diseases demographic analyses.

ABSTRACT:

Background

China has made tremendous progresses in serving the needs of its people living with rare diseases in the past decade, especially over the last 5 years. The Chinese government's systematic approach included a series of coordinated initiatives, amongst these are: forming the Rare Disease Expert Committee (2016), funding the "Rare Diseases Cohort Study" (2016-2020), and publishing its first "Rare Disease Catalog" (2018). Herein, we present the National Rare Diseases Registry System (NRDRS)-China's first national rare diseases registry, and the analysis of cases registered in the first 5 years ending Dec 31, 2020.

Results

The total 62,590 cases covered 166 disease/disease types, forming 183 disease cohorts. The data from nearly 22% of them (13,947 cases) is also linke

SUBMITTER: Guo J 

PROVIDER: S-EPMC8684272 | biostudies-literature | 2021 Dec

REPOSITORIES: biostudies-literature