Reported numbers of patients with rare diseases based on ten-year longitudinal national disability registries in Taiwan

Jin Ding Lin, Lan Ping Lin, Wen Jiu Hung

研究成果: 雜誌貢獻文章

2 引文 (Scopus)

摘要

This paper aims to describe a general demographic picture of patients with rare diseases in Taiwan and particularly focuses on the prevalence of rare diseases over time, age and gender distributions. We analyzed data mainly from the national disability registry from 2002 to 2011 in Taiwan, Republic of China. The results showed that the number of rare diseases increased from 93 to 193 between 2002 and 2011 and that the prevalence of rare diseases increased from 0.02 to 0.74 per 10,000 people in this time period. The gender ratio (male/female) was between 1.02 and 1.13 during this time period, with male cases representing a higher percentage than female cases in the rare disease population. The occurrence of rare diseases was significantly increased in children 3-5 years of age and elementary school children 6-14 years of age. The data also revealed that the occurrence of rare diseases in Taiwan was attributed primarily to pathogenic diseases and secondarily to genetic diseases. To obtain precise epidemiological data on rare diseases for future healthcare planning, this study highlights the importance of the cooperation of healthcare authorities with the social welfare department to strengthen the ability of the public healthcare system to regularly monitor and measure the occurrence of rare diseases in the community.

原文英語
頁(從 - 到)133-138
頁數6
期刊Research in Developmental Disabilities
34
發行號1
DOIs
出版狀態已發佈 - 一月 1 2013
對外發佈Yes

指紋

Rare Diseases
Taiwan
Registries
Delivery of Health Care
Inborn Genetic Diseases
Social Welfare
Age Distribution
Demography

ASJC Scopus subject areas

  • Clinical Psychology
  • Developmental and Educational Psychology

引用此文

Reported numbers of patients with rare diseases based on ten-year longitudinal national disability registries in Taiwan. / Lin, Jin Ding; Lin, Lan Ping; Hung, Wen Jiu.

於: Research in Developmental Disabilities, 卷 34, 編號 1, 01.01.2013, p. 133-138.

研究成果: 雜誌貢獻文章

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