Spinal Cord Injury Clinical Registries: Improving Care across the SCI Care Continuum by Identifying Knowledge Gaps

The healthcare system aims to optimize patient outcomes, such as neurological recovery and health status, and ensure patients can return to full participation in their communities after sustaining a traumatic spinal cord injury (tSCI). These efforts require access to consistent, reliable, and valid sources of clinical data to ensure decisions are evidence-based. Prospective clinical registries can power these efforts by collecting data on injury-, patient-, and system-related factors to provide measurements on patient-centered outcomes, cost, safety, and efficacy that are needed for clinical and cost-effectiveness research and quality improvement effort. The objectives of this article are to: 1) describe the knowledge gaps in the literature throughout the continuum of SCI care that were identified during the evolution of the ACT project, and 2) provide recommendations for bridging some of these gaps.

• 1
  Accurate information on injury severity after tSCI was hindered by difficulties in conducting neurological assessments and classifications of SCI (e.g., timing), variations in reporting, and the lack of a validated SCI-specific measure of associated injuries.
• 2
  There was also limited availability of reliable data on patient factors such as multi-morbidity and patient-reported measures.
• 3
  Knowledge gaps related to structures (e.g., protocols) and processes (e.g., costs) at each phase of care have prevented comprehensive evaluation of system performance.