The Role of Patient Registry in the Care and Therapeutic Development for Patients with Amyotrophic Lateral Sclerosis: JaCALS Naoki Atsuta 1 , Ryoichi Nakamura 1 , Naoki Hayashi 2 , Genki Tohnai 3 , Masahisa Katsuno 2 , Gen Sobue 3,4 1Department of Neurology, Nagoya University Hospital 2Department of Neurology, Nagoya University Graduate School of Medicine 3Nagoya University Graduate School of Medicine 4Aichi Medical University Keyword: 筋萎縮性側索硬化症 , 患者レジストリ , 自然歴 , 予後因子 , バイオリソース , ALS , patient registry , natural history , prognostic factor , bio-resource pp.1215-1225
Published Date 2019/11/1
DOI https://doi.org/10.11477/mf.1416201431
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Amyotrophic lateral sclerosis (ALS) patient registries can assist in the provision of appropriate care to patients and promote therapeutic developments related to ALS. In Japan, a multicenter registration and follow-up system called the Japanese Consortium for Amyotrophic Lateral Sclerosis research (JaCALS) was built in 2006. Genomic DNA samples and B-cell lines of patients with ALS were stored and linked to clinical information. Information obtained from JaCALS shows the natural histories of Japanese patients with ALS, including their genetic backgrounds and clinical and genetic factors associated with disease progression and prognosis. Research efforts that focus on pathophysiology, identification of biomarkers related to progression and prognosis, and drug discoveries for patients with ALS are advanced using data obtained from JaCALS. In the future, we expect that JaCALS will be a source of real-world evidence, combining data from a large number of cases.

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