Atsuta Naoki, Nakamura Ryoichi, Watanabe Hazuki, Sobue Gen
Department of Neurology, Nagoya University Hospital and Nagoya University Graduate School of Medicine.
Brain Nerve. 2014 Sep;66(9):1090-6.
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.
为了研究日本肌萎缩侧索硬化症（ALS）患者的病程，我们设计了一个多中心登记和随访系统，称为日本肌萎缩侧索硬化症研究联盟（JaCALS）。收集了ALS患者的基因组DNA样本和B细胞系，并将其与临床信息相关联。我们设计了一个电话调查系统，由临床研究协调员每3个月检查一次患者的修订版ALS功能评定量表评分及其预后情况。2006年2月，我们开始对ALS患者进行登记。目前，有30家神经病学机构参与了JaCALS，已登记905例ALS患者。JaCALS建立了一个高效的登记和随访系统，将ALS患者的基因组信息联系起来。我们相信这个联盟将有助于ALS的临床研究。
