Citation

Sharif-Alhoseini M, Azadmanjir Z, Sadeghi-Naini M, Ghodsi Z, Naghdi K, Mohammadzadeh M, Azarhomayoun A, Zendehdel K, Khormali M, Sadeghian F, Jazayeri SB, Sehat M, Pirnejad H, Benzel EC, O'Reilly G, Fehlings MG, Vaccaro AR, Rahimi-Movaghar V. Chin. J. Traumatol. 2019; ePub(ePub): ePub.

Affiliation

Sina Trauma and Surgery Research Center, Tehran University of Medical Sciences, Tehran, Iran; Brain and Spinal Cord Injury Research Center, Neuroscience Institute, Tehran University of Medical Sciences, Tehran, Iran. Electronic address: v_rahimi@tums.ac.ir.

Copyright

(Copyright © 2019, Chinese Medical Association)

DOI

10.1016/j.cjtee.2019.05.003

PMID

31445798

Abstract

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 SCI 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 is 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 MOHME, 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.

Copyright © 2019 Chinese Medical Association. Production and hosting by Elsevier B.V. All rights reserved.

Language: en

Keywords

Data accuracy; Injury registries; Iran; Spinal cord injuries