Minnesota Regional Spinal Cord Injury Model System - The Minnesota Regional Spinal Cord Injury Model System (MN SCIMS) proposes to continue as the only Spinal Cord Injury Model System serving the Upper Midwest, a five-state region (MN, WI, IA, SD, and ND) in which an estimated 15,134 people live with traumatic spinal cord injury (SCI). MN SCIMS provides the multidisciplinary continuum of care required of a Model System, spanning emergency medical services, acute care, acute rehabilitation, and post-acute services across Courage Kenny Rehabilitation Institute, Mayo Clinic, Regions Hospital, University of Minnesota/M Health Fairview. MN SCIMS addresses three gaps in the national SCI landscape. First, as the region’s only SCIMS, our Center supplies high-volume longitudinal data from a rural and urban cohort that is older, includes more females, and serves more surgically complex cases than the national average, expanding coverage to non-metropolitan populations that are often omitted from or under-sampled in the National SCIMS Database. Since 2021 our Center has enrolled 228 database participants, exceeding the national enrollment benchmark by 50% and placing MN SCIMS in the top third of centers nationally, while maintaining a 94% Form II follow-up completion rate. Second, our site-specific project addresses the absence of objective, real-time evidence on the symptoms that drive people with SCI into sedentary behavior during the transition from inpatient rehabilitation to community living. Third, our module project addresses an unverified foundation of the national data infrastructure itself. We propose one site-specific research project and one module research project, both in the Exploration and Discovery stages of NIDILRR’s Long-Range Plan, and we will continue to enroll at least 30 database participants each year. The site-specific project, Physical Activity Trajectories, Habits, and Symptoms in Spinal Cord Injury (PATHS-SCI): A Longitudinal Phenotyping Study in Manual Wheelchair Users, pairs wrist-worn accelerometry with ecological momentary assessment to characterize physical activity phenotypes, to identify the acute symptom and contextual conditions that precipitate short-term shifts into sedentary behavior, and to determine whether early habitual activity predicts 12-month health outcomes including secondary complications, rehospitalization, function, and quality of life. This work grounds individualized clinical strategies that prevent secondary conditions and support long-term health. The module project, The Reliability of SCIMS Outcome Measures: A Multi-Site Evaluation of Data Integrity, establishes the test-retest and inter-rater reliability of the SCIMS Form II follow-up interview and produces a quality-improvement roadmap for the network, strengthening the data that inform clinical guidelines, insurance determinations, and vocational benchmarks. MN SCIMS will commit at least 15% of its annual budget leading this module and to participating in another Center’s module. Individuals with SCI shape this work. Our Community Advisory Board, led by people with SCI, informs research priorities, design, interpretation, and dissemination, ensuring both projects address the individual, environmental, and system-level factors that shape recovery and participation. We will coordinate with MSKTC and the National Paralysis Resource Center to disseminate findings in accessible formats to people with SCI, their families, clinicians, researchers, and policymakers. Through this integrated clinical, research, and community engagement program, MN SCIMS will advance long-term health and function, strengthen independent living and participation, and support employment and self-sufficiency for people with SCI in the Upper Midwest and nationally, in direct alignment with the ACL’s priorities of Whole-person health, Employment, and Connecting people to services.
