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KMID : 1035220130050010035
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Korean Journal of Neuromuscular Disorders
2013 Volume.5 No. 1 p.35 ~ p.39
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Preliminary Results of the Korean ALS Registry
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Sohn Eun-Hee
Kim Byung-Jo
Kim Jong-Kuk
Bae Jong-Seog
Paek Won-Ki
Suh Bum-Chun
Sung Jung-Joon
Ahn Suk-Won
Cho Joong-Yang
Hong Yoon-Ho
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Abstract
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Performing epidemiologic study of amyotrophic lateral sclerosis (ALS) is difficult because it is a rare disease as well as it has devastating course. Incidence and prevalence rate of ALS have been more precise by multicenter registry rather than single center study. Multicenter registry of ALS is emerging as an important way to execute epidemiologic study of ALS. A web-based multicenter registry of ALS in Korea, the Korean ALS registry, was established at January, 2011. The aims of “the Korean ALS registry” are the followings: (1) to establish a database for the prospective collection of epidemiological
information; (2) to assess the incidence and prevalence; (3) to find the temporal and geographic trends in the disease; (4) to define the full clinical spectrum of the disease; (5) to develop treatment guideline based on the database. Total 345 patients (mean age: 58.0±11.8 years, 212 men and 133 women) have been enrolled in this registry. 267 patients (77.4%) were diagnosed as having sporadic ALS. Mean duration between onset time of symptoms and being diagnosed as having ALS was 1.7±3.3 years (range: 0-30). Serial follow-up data were registered in 92 patients and mean duration of follow-up was 13.2±8.1 months. 18 patients were expired, and the cause of death was unidentified in 1/3 of the patients.
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KEYWORD
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Amyotrophic lateral sclerosis , Registry, Epidemiology
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