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Related Experiment Video

Updated: May 24, 2026

In Vivo Electrophysiological Measurement of Compound Muscle Action Potential from the Forelimbs in Mouse Models of Motor Neuron Degeneration
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Published on: June 15, 2018

Current Data Collection Efforts in Neuromuscular Disease Research: A Scoping Review.

Lilli Schuckert1,2, Joost Daams3, Ronald Cornet1,2

  • 1Amsterdam UMC - University of Amsterdam, Medical Informatics, Amsterdam, the Netherlands.

Studies in Health Technology and Informatics
|May 23, 2026
PubMed
Summary

Digital platforms are increasingly used for neuromuscular disease (NMD) research, but challenges in data quality and standardization persist. Consistent frameworks are needed to maximize the benefits of these tools for NMD understanding and clinical trials.

Keywords:
data collectiondigital platformsneuromuscular diseasesrare diseases

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Last Updated: May 24, 2026

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Published on: January 12, 2019

Area of Science:

  • Neurology
  • Biomedical Informatics
  • Data Science

Background:

  • Neuromuscular diseases (NMDs) are rare, progressive, and heterogeneous, complicating research and data collection.
  • Fragmented data practices hinder advancements in understanding NMDs and supporting clinical trials.
  • High-quality, interoperable data are crucial for NMD research progress.

Purpose of the Study:

  • To review how data are collected and shared in neuromuscular disease research.
  • To focus on the role and impact of digital platforms in NMD data management.
  • To identify challenges and opportunities for digital data collection in NMD research.

Main Methods:

  • A scoping review was conducted following PRISMA-ScR guidelines.
  • Searches of Ovid MEDLINE ALL and Ovid Embase yielded 4,249 records.
  • 110 studies describing NMD registries, databases, and digital infrastructures were included.

Main Results:

  • Diverse digital infrastructures are used, including Electronic Data Capture (EDC) systems, online portals, and wearable device integration.
  • Digital tools offer advantages in scalability, accessibility, and real-time monitoring.
  • Persistent issues include data quality, standardization, representativeness, governance, and sustainability.

Conclusions:

  • Digital platforms are increasingly adopted in NMD research but lack consistent implementation frameworks.
  • Addressing data quality, standardization, and governance is essential for effective digital data utilization.
  • Future research should explore expert perspectives to optimize digital platforms for NMD research and care.