肌萎缩侧索硬化
医学
多中心研究
神经学
物理疗法
物理医学与康复
家庭医学
内科学
疾病
精神科
随机对照试验
作者
Masashi Aoki,Ryoichi Nakamura,Hazuki Watanabe,Gen Sobue
出处
期刊:PubMed
日期:2014-09-01
卷期号:66 (9): 1090-6
被引量:14
摘要
To investigate the longitudinal course of Japanese patients with amyotrophic lateral sclerosis (ALS), we have designed a multicenter registration and follow-up system called Japanese Consortium for Amyotrophic Lateral Sclerosis research (JaCALS). Genomic DNA samples and B-cell lines from patients with ALS were stored and linked to their clinical information. We designed a telephone survey system involving clinical research coordinators to check the patients' scores on the ALS Functional Rating Scale-revised and their prognoses every 3 months. In February 2006, we began registering patients with ALS. Currently, 30 neurology institutions are participating in the JaCALS, and 905 patients with ALS are registered. The JaCALS has established an efficient registration and follow-up system linking genomic information from patients with ALS. We believe this consortium will contribute to clinical research in ALS.
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