[Infrastructure for the clinical research of muscular dystrophies: remudy and MDCTN].

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  • Additional Information
    • Source:
      Publisher: Nihon Shinkei Gakkai Country of Publication: Japan NLM ID: 0417466 Publication Model: Print Cited Medium: Internet ISSN: 1882-0654 (Electronic) Linking ISSN: 0009918X NLM ISO Abbreviation: Rinsho Shinkeigaku Subsets: MEDLINE
    • Publication Information:
      Publication: April 1963-: Tōkyō : Nihon Shinkei Gakkai
      Original Publication: Tōkyō : Nihon Rinshō Shinkei Gakkai, 1960-
    • Subject Terms:
      International Cooperation* ; Muscular Dystrophies*/epidemiology ; Registries* ; Research*; Clinical Trials as Topic ; Japan
    • Abstract:
      Remudy, operated by the NCNP, runs two national registries for Dystrophinopathy and GNE myopathy in Japan under the collaboration with the TREAT-NMD alliance. The aim is to construct the clinical research infrastructure and accelerate the clinical development research for these rare diseases. We successfully provide the data sets for the feasibility studies, send out the appropriate information of the clinical trials for the candidates to speed up the recruitment for trials, collaboration with the Muscular Dystrophy Clinical Trial Network: MDCTN, as well as present the natural history and epidemiological data of the rare diseases with a new 'registry based' research style. Remudy provides a prototype of the clinical research infrastructure to over come the rare and incurable diseases.
    • Publication Date:
      Date Created: 20141219 Date Completed: 20151019 Latest Revision: 20190918
    • Publication Date:
      20240829
    • Accession Number:
      10.5692/clinicalneurol.54.1069
    • Accession Number:
      25519964