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. 2017 Oct 15;34(20):2924-2933.
doi: 10.1089/neu.2016.4937. Epub 2017 Jul 26.

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

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Free PMC article

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

Marcel F Dvorak et al. J Neurotrauma. .
Free PMC article

Abstract

Timely access and ongoing delivery of care and therapeutic interventions is needed to maximize recovery and function after traumatic spinal cord injury (tSCI). To ensure these decisions are evidence-based, access to consistent, reliable, and valid sources of clinical data is required. The Access to Care and Timing Model used data from the Rick Hansen SCI Registry (RHSCIR) to generate a simulation of healthcare delivery for persons after tSCI and to test scenarios aimed at improving outcomes and reducing the economic burden of SCI. Through model development, we identified knowledge gaps and challenges in the literature and current health outcomes data collection throughout the continuum of SCI care. The objectives of this article were to describe these gaps and to provide recommendations for bridging them. 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. There was also limited availability of reliable data on patient factors such as multi-morbidity and patient-reported measures. 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. Addressing these knowledge gaps will enhance comparative and cost-effectiveness evaluations to inform decision-making and standards of care. Recommendations to do so were: standardize data element collection and facilitate database linkages, validate and adopt more outcome measures for SCI, and increase opportunities for collaborations with stakeholders from diverse backgrounds.

Keywords: clinical registry; data quality; healthcare system; knowledge gaps; spinal cord injury.

Conflict of interest statement

This study was supported by financial contributions from the Rick Hansen Institute, the Ontario Neurotrauma Foundation, and the Government of Canada through Health Canada and Western Economic Diversification Canada.

Figures

<b>FIG. 1.</b>
FIG. 1.
Modified Knowledge-to-Action Cycle used in the ACT project (adapted from Lost in knowledge translation: Time for a map? Graham ID, et al. Journal of Continuing Education in the Health Professions, 26(1). Copyright ©2006. The Alliance for Continuing Education in the Health Professions, the Association for Hospital Medical Education, and the Society for Academic Continuing Medical Education. Used with permission.). ACT, Access to Care and Timing; RHSCIR, Rick Hansen Spinal Cord Injury Registry; tSCI, traumatic spinal cord injury.

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