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The International Spinal Cord Injury Survey: The Way Forward

  • Jerome Bickenbach
    Correspondence
    Corresponding authorJerome Bickenbach, PhD, Swiss Paraplegic Research, Guido A. Zäch Institute, 6207 Nottwil, Switzerland.
    Affiliations
    Swiss Paraplegic Research, Guido A. Zäch Institute, Nottwil, Switzerland

    Department of Health Sciences and Medicine, University of Lucerne, Lucerne, Switzerland
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  • Linamara Batistella
    Affiliations
    School of Medicine, University of São Paulo, São Paulo, Brazil
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  • Christoph Gutenbrunner
    Affiliations
    Department of Rehabilitation Medicine, Hannover Medical School, Hannover, Germany
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  • James Middleton
    Affiliations
    John Walsh Centre for Rehabilitation Research, Sydney Medical School, Northern Clinical School, Faculty of Medicine and Health, The University of Sydney, Sydney, Australia
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  • Marcel W. Post
    Affiliations
    University of Groningen, University Medical Center Groningen, Department of Rehabilitation Medicine, Center for Rehabilitation, Groningen, The Netherlands

    Center of Excellence for Rehabilitation Medicine, UMC Utrecht Brain Center, University Medical Center, Utrecht and De Hoogstraat Rehabilitation, Utrecht, The Netherlands
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  • InSCI
    Author Footnotes
    ∗ The members of the InSCI group are: James Middleton, John Walsh Centre for Rehabilitation Research, Sydney Medical School, Northern Clinical School, The University of Sydney, Sydney Australia; Linamara Battistella, School of Medicine, University of Saõ Paulo, Saõ Paulo, Brazil; Jianan Li, Department of Rehabilitation Medicine, Nanjing Medical University, Nanjing, China; Christoph Gutenbrunner, Department of Rehabilitation Medicine, Hannover Medical School, Hannover, Germany; Christina-Anastasia Rapidi, Department of Physical and Rehabilitation Medicine, General Hospital “G.Gennimatas,” Athens, Greece; Luh Karunia Wahyuni, Medicine and Rehabilitation Department, Dr Cipto Mangunkusumo National General Hospital - Faculty of Medicine, Universitas Indonesia, Jakarta, Indonesia; Eiichi Saitoh, Department of Rehabilitation Medicine I, School of Medicine, Fujita Health University, Toyoake, Japan; Bum Suk Lee, Department of Rehabilitation Medicine, National Rehabilitation Center & Hospital, Seoul, Korea; Alvydas Juocevicius, Rehabilitation, Physical and Sport Medicine Center Department of Vilnius University Hospital Santariskiu Klinikos, Medical Faculty Vilnius University, Vilnius, Lithuania; Abderrazak Hajjioui, Department of Rehabilitation Medicine, Clinical Neuroscience Laboratory, Faculty of Medicine, Sidi Mohammed Ben Abdallah University, Fez, Morocco; Marcel W. Post, University of Groningen, University Medical Center Groningen, Center for Rehabilitation Medicine, Groningen, the Netherlands; Johan K. Stanghelle, Department of Physical Medicine and Rehabilitation, Faculty of Medicine, University of Oslo, Oslo, Norway; Daiana Popa, Clinical Rehabilitation Hospital Felix-Spa Bihor County, Oradea, Romania; Mercè Avellanet, Research group in Health Sciences and Health Services, Universitat d'Andorra, Spain; Michael Baumberger, Swiss Paraplegic Center, Nottwil, Switzerland; Apichana Kovindha, Department of Rehabilitation Medicine, Faculty of Medicine, Chiang Mai University, Chiang Mai, Thailand; Reuben Escorpizo, The University of Vermont, Department of Rehabilitation and Movement Science, Burlington, VT, USA.
  • Gerold Stucki
    Affiliations
    Swiss Paraplegic Research, Guido A. Zäch Institute, Nottwil, Switzerland

    Department of Health Sciences and Medicine, University of Lucerne, Lucerne, Switzerland
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  • Author Footnotes
    ∗ The members of the InSCI group are: James Middleton, John Walsh Centre for Rehabilitation Research, Sydney Medical School, Northern Clinical School, The University of Sydney, Sydney Australia; Linamara Battistella, School of Medicine, University of Saõ Paulo, Saõ Paulo, Brazil; Jianan Li, Department of Rehabilitation Medicine, Nanjing Medical University, Nanjing, China; Christoph Gutenbrunner, Department of Rehabilitation Medicine, Hannover Medical School, Hannover, Germany; Christina-Anastasia Rapidi, Department of Physical and Rehabilitation Medicine, General Hospital “G.Gennimatas,” Athens, Greece; Luh Karunia Wahyuni, Medicine and Rehabilitation Department, Dr Cipto Mangunkusumo National General Hospital - Faculty of Medicine, Universitas Indonesia, Jakarta, Indonesia; Eiichi Saitoh, Department of Rehabilitation Medicine I, School of Medicine, Fujita Health University, Toyoake, Japan; Bum Suk Lee, Department of Rehabilitation Medicine, National Rehabilitation Center & Hospital, Seoul, Korea; Alvydas Juocevicius, Rehabilitation, Physical and Sport Medicine Center Department of Vilnius University Hospital Santariskiu Klinikos, Medical Faculty Vilnius University, Vilnius, Lithuania; Abderrazak Hajjioui, Department of Rehabilitation Medicine, Clinical Neuroscience Laboratory, Faculty of Medicine, Sidi Mohammed Ben Abdallah University, Fez, Morocco; Marcel W. Post, University of Groningen, University Medical Center Groningen, Center for Rehabilitation Medicine, Groningen, the Netherlands; Johan K. Stanghelle, Department of Physical Medicine and Rehabilitation, Faculty of Medicine, University of Oslo, Oslo, Norway; Daiana Popa, Clinical Rehabilitation Hospital Felix-Spa Bihor County, Oradea, Romania; Mercè Avellanet, Research group in Health Sciences and Health Services, Universitat d'Andorra, Spain; Michael Baumberger, Swiss Paraplegic Center, Nottwil, Switzerland; Apichana Kovindha, Department of Rehabilitation Medicine, Faculty of Medicine, Chiang Mai University, Chiang Mai, Thailand; Reuben Escorpizo, The University of Vermont, Department of Rehabilitation and Movement Science, Burlington, VT, USA.

      Abstract

      As a community survey of individuals living with spinal cord injury in 22 countries, representing all 6 of the World Health Organization regions, the International Spinal Cord Injury (InSCI) community survey is one of the few surveys that highlights not only basic medical issues, but also the impact of spinal cord injury (SCI) on the everyday lives of people. The InSCI survey is part of a much larger project known as the Learning Health System for SCI Initiative (LHS-SCI). The objective of this article is to highlight some of the ongoing and planned next steps at the national and international levels. The implementation phase of the LHS-SCI initiative, beginning with the publication of primary results and extending until 2023, will use the results of the InSCI survey as evidence for implementation of recommendations for improving the societal response to the needs of individuals with SCI at the national level. To illustrate the variety of implementation activities currently underway, we provide country examples from Australia, Morocco, Malaysia, and Germany to demonstrate the diversity of approaches to the implementation of InSCI data. The implementation phase of the LHS-SCI initiative promises to usher in a new era of SCI research that will be seamlessly linked to ongoing and effective implementation actions, at both international and national levels and across settings from clinical practice, health systems management, and national policy.

      Keywords

      List of abbreviations:

      InSCI (International Spinal Cord Injury), IPSCI (International Perspectives on Spinal Cord Injury), ISCoS (International Spinal Cord Society), ISPRM (International Society of Physical Rehabilitation and Medicine), LHS-SCI (Learning Health System for Spinal Cord Injury Study), SCI (spinal cord injury), WHO (World Health Organization)
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