Objective Amyotrophic lateral sclerosis (ALS) is a severe neurodegenerative disease and information on disease burden of ALS in mainland China was limited. We aimed to estimate the prevalence and incidence of ALS in China.
Methods We used 2012–2016 data from China’s Urban Employee Basic Medical Insurance and Urban Residence Basic Medical Insurance, covering approximately 0.43 billion individuals. ALS cases were identified by the primary diagnosis (International Classification of Diseases code or text of diagnosis) in the insurance database.
Results The crude prevalence and incidence in 2016 were 2.91 per 100 000 person-years (95% CI 2.31 to 3.58) and 1.65 (95% CI 1.33 to 2.01), respectively. The standardised prevalence and incidence based on 2010 Chinese census data were 2.97 (95% CI 2.91 to 3.03) and 1.62 (95% CI 1.58 to 1.67), respectively. The annual prevalence between 2013 and 2016 remained relatively constant, ranging from 2.91 (95% CI 2.31 to 3.58) in 2016 to 3.29 (95% CI 2.51 to 4.17) in 2014 (linear regression: β=−0.129, p=0.104). Both rates peaked in the group aged 75–79 years.
Conclusions The prevalence and incidence of ALS in mainland China were lower than those in developed countries, and maintained a relatively stable trend. The age at onset and age at diagnosis for ALS patients were younger than those in developed countries. Further research is expected to clarify the potential pathophysiological mechanism of ALS.
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LX, LC and SW are joint first authors.
SZ, PG and DF contributed equally.
Contributors Conception: SZ and DF. Design: SW, LX, PG and SZ. Administrative support: SW and SZ. Provision of study material or patients: JW. Collection and assembly of data: JW, GL, LX, JF and LL. Data analysis and interpretation: LX, SW, DF, PG and SZ. Manuscript writing: LX, LC and SW. Final approval of manuscript: all authors.
Funding This study was funded by the National Natural Science Foundation (grant numbers 91646107, 91846112, 91546120, 81701248 and 81873784).
Disclaimer The authors alone are responsible for the content and writing of the paper.
Competing interests None declared.
Patient consent for publication Not required.
Ethics approval The study protocol was approved by the ethical review committee of the Peking University Health Science Center (IRB. No: IRB00001052-18012).
Provenance and peer review Not commissioned; externally peer reviewed.
Data availability statement Data may be obtained from a third party and are not publicly available. The data that support the findings of this study are available from National Healthcare Security Administration of China but restrictions apply to the availability of these data, which were used under license for the current study, and so are not publicly available. Data are however available from the authors on reasonable request and with permission of National Healthcare Security Administration of China.