Evolution of the Veterans Health Administration Spinal Cord Injuries and Disorders (SCI/D) Registry (VHA SCIDR): Characterization from 1994 to 2022.

IF 1.8 4区医学 Q3 CLINICAL NEUROLOGY

Journal of Spinal Cord Medicine Pub Date : 2024-12-11 DOI:10.1080/10790268.2024.2434305

Jennifer L Sippel, Rafer Willenberg, Charlesnika T Evans, Zhiping Huo, Gabriel Escudero, Kevin T Stroupe, Adam Eberhart, Stephen P Burns, Belinda Frazier, I Manosha Wickremasinghe, Bridget M Smith

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引用次数: 0

Abstract

Context: Veterans Health Administration (VHA) maintained a registry of identified and verified cases of US Veterans with spinal cord injuries and disorders (SCI/D) since 1994: VHA SCI/D Registry (VHA SCIDR). Data elements, capture, and storage methods varied over time.

Objective: Describe the consolidation and harmonization of historical VHA SCIDR data spanning three decades during its evolution to an automated platform and report population characteristics.

Methods: The VHA SCIDR captured data using four distinct acquisition methods over 28 years, including cases of Veterans with SCI/D receiving SCI/D System of Care services, via 25 SCI/D Centers and 122 Spoke Sites throughout the VHA healthcare system. Foundational elements of VHA SCIDR data capture methods, harmonization of data elements with the current automated algorithm, access protocol, and governance structure are described.

Results: From Fiscal Years (FYs) 1994 to 2022, VHA SCIDR identified 52,407 Veterans with traumatic or non-traumatic SCI/D, and 96.95% were male, 56.09% White, 16.57% were Black, 1.23% Asian and Pacific Islander, 0.75% Native American, and 25.36% unknown. Traumatic etiology comprised 53.39% of the sample, while 31.75% were non-traumatic, with 14.87% missing etiology classification. Injury category proportions were 5.19% high tetraplegia, 5.83% low tetraplegia, 5.85% high paraplegia, 7.53% low paraplegia, and 23.35% AIS D, with 52.25% missing or unable to be calculated.

Conclusions: VHA SCIDR is one of the three largest SCI/D registries in North America and is the case-identification platform for VHA SCI/D operations, program evaluation, and research studies. VHA SCIDR is connected to each Veteran's VHA healthcare data, facilitating big data research.

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退伍军人健康管理局脊髓损伤和疾病（SCI/D）登记处（VHA SCIDR）的演变：1994年至2022年的特征

背景：自1994年以来，退伍军人健康管理局（VHA）对美国退伍军人脊髓损伤和疾病（SCI/D）的确诊和验证病例进行了登记：VHA SCI/D登记处（VHA SCIDR）。数据元素、捕获和存储方法随时间而变化。目的：描述三十年来VHA SCIDR历史数据在向自动化平台发展过程中的整合和协调，并报告人口特征。方法：VHA SCIDR通过25个SCI/D中心和122个VHA医疗保健系统的Spoke站点，使用四种不同的获取方法收集了28年来的数据，包括接受SCI/D护理系统服务的SCI/D退伍军人病例。描述了VHA SCIDR数据捕获方法的基本元素、数据元素与当前自动算法、访问协议和治理结构的协调。结果：1994 - 2022财年，VHA SCIDR共鉴定出52407例创伤性或非创伤性脊髓损伤/D退伍军人，其中男性占96.95%，白人占56.09%，黑人占16.57%，亚裔和太平洋岛民占1.23%，美洲原住民占0.75%，未知人群占25.36%。外伤性病因占53.39%，非外伤性病因占31.75%，病因分类缺失14.87%。损伤类别比例为高四肢瘫5.19%、低四肢瘫5.83%、高截瘫5.85%、低截瘫7.53%、AIS D 23.35%，其中52.25%缺失或无法计算。结论：VHA SCIDR是北美三大SCI/D注册中心之一，是VHA SCI/D操作、项目评估和研究的案例识别平台。VHA SCIDR连接到每个退伍军人的VHA医疗保健数据，促进大数据研究。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Journal of Spinal Cord Medicine 医学-临床神经学

CiteScore

4.20

自引率

5.90%

发文量

101

审稿时长

6-12 weeks

期刊介绍： For more than three decades, The Journal of Spinal Cord Medicine has reflected the evolution of the field of spinal cord medicine. From its inception as a newsletter for physicians striving to provide the best of care, JSCM has matured into an international journal that serves professionals from all disciplines—medicine, nursing, therapy, engineering, psychology and social work.