STUDY DESIGN Descriptive study. OBJECTIVES The aim of this manuscript is to describe the development process of the data set for the National Spinal Cord Injury Registry of Iran (NSCIR-IR). SETTING SCI community in Iran. METHODS The NSCIR-IR data set was developed in 8 months, from March 2015 to October 2015. An expert panel of 14 members was formed. After a review of data sets of similar registries in developed countries, the selection and modification of the basic framework were performed over 16 meetings, based on the objectives and feasibility of the registry. RESULTS The final version of the data set was composed of 376 data elements including sociodemographic, hospital admission, injury incidence, prehospital procedures, emergency department visit, medical history, vertebral injury, spinal cord injury details, interventions, complications, and discharge data. It also includes 163 components of the International Standards for the Neurologic Classification of Spinal Cord Injury (ISNCSCI) and 65 data elements related to quality of life, pressure ulcers, pain, and spasticity. CONCLUSION The NSCIR-IR data set was developed in order to meet the quality improvement objectives of the registry. The process was centered around choosing the data elements assessing care provided to individuals in the acute and chronic phases of SCI in hospital settings. The International Spinal Cord Injury Data Set was selected as a basic framework, helped by comparison with data from other countries. Expert panel modifications facilitated the implementation of the registry process with the current clinical workflow in hospitals.

中文翻译：

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伊朗国家脊髓损伤登记处 (NSCIR-IR) 的数据集开发：提高护理质量的进展。


研究设计 描述性研究。目的 本手稿的目的是描述伊朗国家脊髓损伤登记处 (NSCIR-IR) 数据集的开发过程。伊朗 SETTING SCI 社区。方法 NSCIR-IR数据集的开发历时8个月，从2015年3月到2015年10月。组成了一个由14名成员组成的专家小组。在审查了发达国家类似登记处的数据集后，根据登记处的目标和可行性，经过16次会议对基本框架进行了选择和修改。结果数据集的最终版本由 376 个数据元素组成，包括社会人口统计、入院、受伤发生率、院前程序、急诊就诊、病史、椎体损伤、脊髓损伤详细信息、干预措施、并发症和出院数据。它还包括脊髓损伤神经学分类国际标准 (ISNCSCI) 的 163 个组成部分以及与生活质量、压疮、疼痛和痉挛相关的 65 个数据元素。结论 NSCIR-IR 数据集的开发是为了满足注册管理机构的质量改进目标。该过程的重点是选择数据元素，评估医院环境中为 SCI 急性期和慢性期个人提供的护理。通过与其他国家的数据进行比较，选择国际脊髓损伤数据集作为基本框架。专家小组的修改促进了医院当前临床工作流程的注册流程的实施。