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[Database for patients with Duchenne muscular dystrophy].

H Fukunaga1, T Ishiduka, M Sato

  • 1Department of Neurology, Minamikyushu National Hospital.

Rinsho Shinkeigaku = Clinical Neurology
|November 1, 1990
PubMed
Summary

This study established a Japanese Duchenne muscular dystrophy patient database for accurate patient evaluation and therapeutic trials. The database collects genetic, clinical, and treatment data, yielding initial results on disease progression and drug efficacy.

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Area of Science:

  • Neurology
  • Genetics
  • Clinical Research

Context:

  • Duchenne muscular dystrophy (DMD) requires standardized data collection for effective management.
  • Previous data collection methods were insufficient for comprehensive patient evaluation and clinical trials.
  • Establishing a centralized database is crucial for advancing DMD research in Japan.

Purpose:

  • To create a comprehensive database for patients with Duchenne muscular dystrophy in Japan.
  • To enable accurate and serial evaluation of patients for therapeutic trial design.
  • To facilitate the analysis of disease progression and treatment outcomes.

Summary:

  • A database was developed using basic and course cards to collect patient demographics, genetic information, symptoms, muscle strength, pulmonary function, and therapeutic trial data.

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  • Physicians input data biannually, contributing to a growing dataset of 519 basic and 1026 course cards.
  • Initial analyses present findings on the age of ambulation milestones, muscle strength correlations with functional grades, and drug-induced strength changes.

    • Impact:

    • Provides a foundation for longitudinal studies and personalized treatment strategies in DMD.
    • Supports the design and execution of more effective clinical trials for novel DMD therapies.
    • Enhances understanding of DMD natural history and treatment responses within the Japanese population.