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Future of the SwiSCI: Perspectives of the First National Cohort Study Built on a 360° Research Model
Carla Sabariego, Marija Glisic, Mirjam Brach1
1Swiss Paraplegic Research, Nottwil, Switzerland.
Abstract:
The Swiss Spinal Cord Injury Cohort Study is a national longitudinal study applying a comprehensive model of research to understand the lived experience of individuals with spinal cord injury. Built on the framework of the International Classification of Functioning, Disability and Health and supported by an inclusive, multistakeholder governance structure, the Swiss Spinal Cord Injury Cohort Study enables biological, clinical, psychosocial, and policy-relevant research. This article presents its governance, delineates why the Swiss Spinal Cord Injury Cohort Study serves as a foundation for a learning health system, identifies emerging research needs in the context of the Swiss National SCI Strategy 2025-2034, and discusses key methodological challenges and opportunities of the Swiss Spinal Cord Injury Cohort Study. The Swiss Spinal Cord Injury Cohort Study represents a pioneering and sustainable model for data-driven, person-centered research, which has positioned itself as a cornerstone of evidence-based policy and practice in Switzerland to foster health, functioning and inclusion of persons with spinal cord injury. Its foundational role in shaping the Swiss National SCI Strategy 2025-2034-and its mandate to support its implementation, monitoring and evaluation-underscore its strategic value. Beyond its national impact, the Swiss Spinal Cord Injury Cohort Study showcases how longitudinal cohort studies can support comprehensive research that tackles aspects relevant to the lives of persons with chronic diseases.
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