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Remudy En Kimura 1 , Harumasa Nakamura 1 , Ichizo Nishino 1,2 1Translational Medical Center, National Center of Neurology and Psychiatry 2Department of Nauromuscular Research, National Institute of Neuroscience, National Center of Neurology and Psychiatry Keyword: Remudy , muscular dystrophy , rare disease , global clinical trials , TREAT-NMD pp.1396-1402
Published Date 2014/11/1
DOI https://doi.org/10.11477/mf.1416200045
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Abstract

Remudy (Registry of Muscular Dystrophy), operated by NCNP (the National Center of Neurology and Psychiatry), Japan, runs two national registries for Dystrophinopathy and GNE myopathy in collaboration with the TREAT-NMD (Translational Research in Europe——Assessment and Treatment of Neuromuscular Disease) alliance. The aim of Remudy is to construct a clinical research infrastructure that accelerates the pace of clinical development research for these rare diseases. We successfully provide data sets for feasibility studies, send out appropriate information about clinical trials to speed up the recruitment of candidates, as well as present the natural history and epidemiology data of these rare diseases using a new 'registry based' research style. Remudy presents a prototype model of the clinical research infrastructure to overcome these rare and incurable diseases.


Copyright © 2014, Igaku-Shoin Ltd. All rights reserved.

基本情報

電子版ISSN 1344-8129 印刷版ISSN 1881-6096 医学書院

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