National Spinal Cord Injury Registry of Iran (NSCIR-IR) – a critical appraisal of its strengths and weaknesses

• Main Authors: Mahdi Sharif-Alhoseini, Zahra Azadmanjir, Mohsen Sadeghi-Naini, Zahra Ghodsi, Khatereh Naghdi, Mahdi Mohammadzadeh, Amir AzarHomayoun, Kazem Zendehdel, Moein Khormali, Farideh Sadeghian, Seyed Behzad Jazayeri, Mojtaba Sehat, Habibollah Pirnejad, Edward C. Benzel, Gerard O'Reilly, Michael G. Fehlings, Alexander R. Vaccaro, Vafa Rahimi-Movaghar
• Format: Article
• Language: English
• Published: Elsevier 2019-10-01
• Series: Chinese Journal of Traumatology
• Online Access: http://www.sciencedirect.com/science/article/pii/S1008127519300045

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. Keywords: Spinal cord injuries, Injury registries, Data accuracy, Iran