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International Spinal Cord Injury Survey: The Way Forward.

Jerome Bickenbach1, Harvinder S Chhabra2, Belgin Erhan3

  • 1Swiss Paraplegic Research (SPF), Nottwil, Switzerland.

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|November 15, 2025
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Summary

The International Spinal Cord Injury (InSCI) community survey gathered extensive data on spinal cord injury/disease (SCI/D) experiences globally. It highlights the need for sustainable governance and effective strategies to implement findings for improved SCI/D care and policy.

Keywords:
Health surveysRehabilitationSpinal cord injuries

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Area of Science:

  • Global Health
  • Rehabilitation Medicine
  • Human Rights in Healthcare

Background:

  • The International Spinal Cord Injury (InSCI) community survey is a multinational, observational cohort study.
  • It collects comprehensive data on the medical and lived experiences of individuals with spinal cord injury/disease (SCI/D).
  • The survey is part of the Learning Health System for SCI Initiative, employing a 360° approach.

Purpose of the Study:

  • To summarize the uniqueness and added value of the InSCI survey in health research and human rights.
  • To address the challenge of long-term sustainability for the InSCI initiative.
  • To explore opportunities for developing implementation strategies using InSCI data.

Main Methods:

  • Cross-sectional, multinational, observational cohort study design.
  • Data collection across 31 countries, representing all 6 World Health Organization regions.
  • Utilized a 360° approach to capture all aspects of SCI/D experience and environmental factors.

Main Results:

  • The survey has generated substantial data on both medical issues and the lived experience of SCI/D.
  • Identified the need for a sustainable governance structure and financial strategy for long-term InSCI continuity.
  • Highlighted opportunities for utilizing rich evidence for intracountry comparisons and informing policy.

Conclusions:

  • The InSCI survey offers significant value to health research and human rights perspectives.
  • Ensuring the long-term sustainability of the InSCI initiative is a critical challenge.
  • Developing effective implementation strategies is key to translating InSCI findings into practice and policy.