Sharif-Alhoseini Mahdi, Azadmanjir Zahra, Sadeghi-Naini Mohsen, Ghodsi Zahra, Naghdi Khatereh, Mohammadzadeh Mahdi, AzarHomayoun Amir, Zendehdel Kazem, Khormali Moein, Sadeghian Farideh, Jazayeri Seyed Behzad, Sehat Mojtaba, Pirnejad Habibollah, Benzel Edward C, O'Reilly Gerard, Fehlings Michael G, Vaccaro Alexander R, Rahimi-Movaghar Vafa
Sina Trauma and Surgery Research Center, Tehran University of Medical Sciences, Tehran, Iran.
Department of Health Information Management, School of Allied Medical Sciences, Tehran University of Medical Sciences, Tehran, Iran.
Chin J Traumatol. 2019 Oct;22(5):300-303. doi: 10.1016/j.cjtee.2019.05.003. Epub 2019 Jul 13.
The National Spinal Cord Injury Registry of Iran (NSCIR-IR) is a not-for-profit, hospital-based, and prospective observational registry that appraises the quality of care, long-term outcomes and the personal and psychological burden of traumatic spinal cord injury in Iran. Benchmarking validity in every registry includes rigorous attention to data quality. Data quality assurance is essential for any registry to make sure that correct patients are being enrolled and that the data being collected are valid. We reviewed strengths and weaknesses of the NSCIR-IR while considering the methodological guidelines and recommendations for efficient and rational governance of patient registries. In summary, the steering committee, funded and maintained by the Ministry of Health and Medical Education of Iran, the international collaborations, continued staff training, suitable data quality, and the ethical approval are considered to be the strengths of the registry, while limited human and financial resources, poor interoperability with other health systems, and time-consuming processes are among its main weaknesses.
伊朗国家脊髓损伤登记处（NSCIR-IR）是一个非营利性、基于医院的前瞻性观察登记处，旨在评估伊朗创伤性脊髓损伤的护理质量、长期预后以及个人和心理负担。每个登记处的基准有效性都包括对数据质量的严格关注。数据质量保证对于任何登记处都至关重要，以确保纳入正确的患者并确保所收集的数据有效。我们在考虑患者登记处高效合理管理的方法指南和建议的同时，审查了NSCIR-IR的优势和劣势。总之，由伊朗卫生和医学教育部资助和维持的指导委员会、国际合作、持续的工作人员培训、合适的数据质量以及伦理批准被认为是该登记处的优势，而人力和财力资源有限、与其他卫生系统的互操作性差以及流程耗时是其主要劣势。
