National Spinal Cord Injury Statistical Center

The National Spinal Cord Injury Statistical Center (NSCISC) is operated by the University of Alabama at Birmingham Department of Physical Medicine and Rehabilitation through funding from the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR). NSCISC supports and directs the collection, management, and analysis of the world's largest and longest spinal cord injury (SCI) research database. Organizationally, NSCISC is currently at the hub of a network of 14 NIDILRR-sponsored and 5 subcontract-funded Spinal Cord Injury Model Systems located at major medical centers throughout the United States. In addition to maintaining the national SCI database, NSCISC personnel conduct ongoing, database-oriented research. NSCISC produces annuals reports and "Facts and Figures at a Glance" which can be accessed here. The National Spinal Cord Injury Database has been in existence since 1973 and captures data from an estimated 6% of new SCI cases in the U.S. Since its inception, 28 federally funded SCI Model Systems have contributed data to the National SCI Database. As of March 2016, the database contained information on 31,645 persons who sustained traumatic spinal cord injuries. To assure comparability of data acquired by personnel in various centers, rigid scientific criteria have been established for the collection, management, and analysis of information entered into the database. National Spinal Cord Injury Statistical Center staff has also developed quality control procedures that further enhance the reliability and validity of the database. Within the scope of the Spinal Cord Injury Model System program, the purposes of the National SCI Database are as follows: to study the longitudinal course of traumatic SCI and factors that affect that course; to identify and evaluate trends over time in etiology, demographic, and injury severity characteristics of persons who incur a SCI; to identify and evaluate trends over time in health services delivery and treatment outcomes for persons with SCI; to establish expected rehabilitation treatment outcomes for persons with SCI; and to facilitate other research such as the identification of potential persons for enrollment in appropriate SCI clinical trials and research projects or as a springboard to population-based studies. The Database, however, is not intended to study the effectiveness of model systems care as compared to other systems of health care delivery. It is also not by itself intended to gather and maintain population-based data on spinal cord injuries.

国家脊髓损伤统计中心（NSCISC）由阿拉巴马大学伯明翰分校物理医学与康复系负责运营，该中心获得国家残疾人、独立生活与康复研究研究所（NIDILRR）的资助。NSCISC致力于支持并指导全球最大、历史最悠久的脊髓损伤（SCI）研究数据库的收集、管理和分析工作。在组织架构上，NSCISC目前是美国14个由NIDILRR资助和5个由分包资金支持的脊髓损伤模型系统网络的核心。除了维护国家级SCI数据库外，NSCISC的员工还进行基于数据库的持续研究。NSCISC编制年度报告和“快速概览”事实与数据，可通过此处访问。自1973年成立以来，国家脊髓损伤数据库已收集了美国新发SCI病例的大约6%的数据。自成立以来，已有28个联邦资助的SCI模型系统向国家SCI数据库贡献了数据。截至2016年3月，数据库中包含了31,645名遭受创伤性脊髓损伤的个体的信息。为确保各中心收集的数据可比性，已建立了严格的科学标准，用于数据库中信息的收集、管理和分析。国家脊髓损伤统计中心的工作人员还开发了质量控制程序，以进一步提高数据库的可靠性和有效性。在脊髓损伤模型系统项目范围内，国家SCI数据库的目的如下：研究创伤性SCI的纵向进程及其影响因素；识别和评估SCI患者在病因、人口统计学和损伤严重程度特征方面的时间趋势；识别和评估SCI患者健康服务提供和治疗结果的时序趋势；为SCI患者建立预期的康复治疗结果；并促进其他研究，如识别适合SCI临床试验和研究项目的潜在受试者，或作为基于人群研究的基础。然而，该数据库的目的并非研究模型系统护理相对于其他医疗保健系统的有效性，也不是独立收集和维持基于人群的脊髓损伤数据。

搜集汇总

背景与挑战

背景概述

该数据集是美国国家脊髓损伤统计中心（NSCISC）维护的全球最大、最长的脊髓损伤研究数据库，自1973年开始收集，覆盖美国约6%的新增脊髓损伤病例，截至2016年包含31,645名患者信息。数据集主要用于纵向研究脊髓损伤的病程、人口统计和损伤严重程度趋势、康复治疗结果，并支持其他相关研究，但数据不直接从ICPSR提供，需通过数据所有者获取。