PDF(Pubmed)
Abstract：
Since the 1990s, Veterans Health Administration (VHA) has maintained a registry of Veterans with Spinal Cord Injuries and Disorders (SCI/Ds) to guide clinical care, policy, and research. Historically, methods for collecting and recording data for the VHA SCI/D Registry (VSR) have required significant time, cost, and staffing to maintain, were susceptible to missing data, and caused delays in aggregation and reporting. Each subsequent data collection method was aimed at improving these issues over the last several decades. This paper describes the development and validation of a case-finding and data-capture algorithm that uses primary clinical data, including diagnoses and utilization across 9 million VHA electronic medical records, to create a comprehensive registry of living and deceased Veterans seen for SCI/D services since 2012. A multi-step process was used to develop and validate a computer algorithm to create a comprehensive registry of Veterans with SCI/D whose records are maintained in the enterprise wide VHA Corporate Data Warehouse. Chart reviews and validity checks were used to validate the accuracy of cases that were identified using the new algorithm. An initial cohort of 28,202 living and deceased Veterans with SCI/D who were enrolled in VHA care from 10/1/2012 through 9/30/2017 was validated. Tables, reports, and charts using VSR data were developed to provide operational tools to study, predict, and improve targeted management and care for Veterans with SCI/Ds. The modernized VSR includes data on diagnoses, qualifying fiscal year, recent utilization, demographics, injury, and impairment for 38,022 Veterans as of 11/2/2022. This establishes the VSR as one of the largest ongoing longitudinal SCI/D datasets in North America and provides operational reports for VHA population health management and evidence-based rehabilitation. The VSR also comprises one of the only registries for individuals with non-traumatic SCI/Ds and holds potential to advance research and treatment for multiple sclerosis (MS), amyotrophic lateral sclerosis (ALS), and other motor neuron disorders with spinal cord involvement. Selected trends in VSR data indicate possible differences in the future lifelong care needs of Veterans with SCI/Ds. Future collaborative research using the VSR offers opportunities to contribute to knowledge and improve health care for people living with SCI/Ds.
摘要：
自1990年代以来,退伍军人健康管理局（VHA）维护了一个退伍军人脊髓损伤和疾病（SCI/Ds）的登记册，以指导临床护理。政策,和研究。历史上,为VHASCI/D注册(VSR)收集和记录数据的方法需要大量时间，成本,和人员配备，容易丢失数据，并导致汇总和报告延迟。在过去的几十年中，随后的每种数据收集方法都旨在改善这些问题。本文介绍了使用主要临床数据的病例发现和数据捕获算法的开发和验证，包括900万份VHA电子病历的诊断和利用，创建自2012年以来在SCI/D服务中看到的在世和已故退伍军人的全面注册表。使用多步骤过程来开发和验证计算机算法，以创建具有SCI/D的退伍军人的全面注册表，其记录保存在企业范围的VHACorporateDataWarehouse中。图表审查和有效性检查用于验证使用新算法识别的案例的准确性。对从2012年10月1日至2017年9月30日参加VHA护理的28,202名SCI/D在世和已故退伍军人的初始队列进行了验证。表格,reports,并开发了使用VSR数据的图表，以提供研究的操作工具，预测，并改善对SCI/Ds退伍军人的针对性管理和护理。现代化的VSR包括诊断数据，合格的会计年度，最近的利用，人口统计，损伤,截至2022年11月2日，38022名退伍军人的减值。这将VSR确立为北美最大的正在进行的纵向SCI/D数据集之一，并为VHA人群健康管理和循证康复提供运营报告。VSR还包括非创伤性SCI/Ds患者的唯一注册中心之一，并具有推进多发性硬化症（MS）研究和治疗的潜力。肌萎缩侧索硬化(ALS),和其他脊髓受累的运动神经元疾病。VSR数据的选定趋势表明，SCI/Ds退伍军人未来的终身护理需求可能存在差异。使用VSR的未来合作研究为SCI/Ds患者提供了知识和改善医疗保健的机会。
