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International spinal cord injury socio-demographic basic data set (version 1.0)

Spinal Cord volume 61, pages 313–316 (2023)Cite this article

Subjects

Abstract

Study design

Consensus based on the literature.

Objective

Create an International Spinal Cord Injury (SCI) Socio-Demographic Basic Data Set (Version 1.0).

Setting

International.

Methods

The development included an iterative process where the authors reviewed existing variables containing socio-demographic variables and created a first dataset draft, which was followed by several revisions through email communications. In addition, the work was conducted in parallel with a similar endeavour within the National Institute of Neurological Disorders and Stroke SCI Common Data Elements project in the United States. Subsequently, harmonization between the two projects was sought. Following this, a review process was initiated, including The International SCI Data Sets Committee, the American Spinal Injury Association (ASIA) Board, and the International Spinal Cord Society (ISCoS) Scientific and Executive Committees, and then by publishing on the respective websites for membership feedback. The draft was sent to about 40 national and international organizations and several interested individuals for feedback. All review comments were discussed in the working group and responded to before the final draft was developed, and finally approved by ASIA Board and the ISCoS Scientific and Executive committees.

Results

The final International SCI Socio-Demographic Basic Data Set includes the following variables: Date of data collection, Marital status, Household member count, Years of formal education, and Primary occupation.

Conclusion

The International SCI Socio-Demographic Basic Data Set will facilitate uniform data collection and reporting of socio-demographic information at the time of injury as well as at post-injury follow-ups to facilitate the evaluation and comparisons across studies.

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Acknowledgements

We would like to thank Drs Ruth Marshall, Steven Kirshblum, and Greg Nemunaitis for their valuable comments and suggestions during the review of the International SCI Socio-Demographic Data Set.

Author information

Authors and Affiliations

  1. Department of Physical Medicine and Rehabilitation, University of Alabama at Birmingham, Birmingham, AL, USA

    Yuying Chen

  2. Craig Hospital, Englewood, CO, USA

    Susan Charlifue

  3. Praxis Spinal Cord Institute, Vancouver, BC, Canada

    Vanessa K. Noonan

  4. Spinal Rehabilitation Service, Caulfield Hospital, Alfred Health, Melbourne, VIC, Australia

    Peter W. New

  5. Epworth-Monash Rehabilitation Medicine Unit, Monash University, Melbourne, VIC, Australia

    Peter W. New

  6. Department of Epidemiology and Preventive Medicine, Monash University, Melbourne, VIC, Australia

    Peter W. New

  7. Department of Epidemiology, Centre for Public health, National Institute of Mental Health and Neuro Sciences, Bangalore, India

    Gopalkrishna Gururaj

  8. Department of Rehabilitation Medicine, Tokushima University Hospital, Tokushima, Japan

    Shinsuke Katoh

  9. Department of Sociology and Political Science, Norwegian University of Science and Technology, Trondheim, Norway

    Håkon Leiulfsrud

  10. Center of Excellence for Rehabilitation Medicine, UMC Utrecht Brain Center, University Medical Center Utrecht and De Hoogstraat Rehabilitation, Utrecht, Netherlands

    Marcel W. Post

  11. University of Groningen, University Medical Center Groningen, Department of Rehabilitation Medicine, Groningen, Netherlands

    Marcel W. Post

  12. Department for Spinal Cord Injuries, Rigshospitalet, Copenhagen University Hospital, Copenhagen, Denmark

    Fin Biering-Sørensen

  13. Institute for Clinical Medicine, University of Copenhagen, Copenhagen, Denmark

    Fin Biering-Sørensen

Authors
  1. Yuying Chen
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  2. Susan Charlifue
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  3. Vanessa K. Noonan
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  4. Peter W. New
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  5. Gopalkrishna Gururaj
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  6. Shinsuke Katoh
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  7. Håkon Leiulfsrud
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  8. Marcel W. Post
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  9. Fin Biering-Sørensen
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Contributions

YC: Drafting the data set and co-drafting this paper; FBS: Co-drafting this paper; All authors: Serving on the working group and creating the data set from conceptualization to review of variables and response to comments. All authors have contributed to paper preparation and reviewed the final version of this paper.

Corresponding author

Correspondence to Yuying Chen.

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The authors declare no competing interests.

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Chen, Y., Charlifue, S., Noonan, V.K. et al. International spinal cord injury socio-demographic basic data set (version 1.0). Spinal Cord 61, 313–316 (2023). https://doi.org/10.1038/s41393-023-00896-0

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