TY - JOUR
T1 - National Spinal Cord Injury Registry of Iran (NSCIR-IR) - a critical appraisal of its strengths and weaknesses
AU - Sharif-Alhoseini, Mahdi
AU - Azadmanjir, Zahra
AU - Sadeghi-Naini, Mohsen
AU - Ghodsi, Zahra
AU - Naghdi, Khatereh
AU - Mohammadzadeh, Mahdi
AU - AzarHomayoun, Amir
AU - Zendehdel, Kazem
AU - Khormali, Moein
AU - Sadeghian, Farideh
AU - Jazayeri, Seyed Behzad
AU - Sehat, Mojtaba
AU - Pirnejad, Habibollah
AU - Benzel, Edward C
AU - O'Reilly, Gerard
AU - Fehlings, Michael G
AU - Vaccaro, Alexander R
AU - Rahimi-Movaghar, Vafa
N1 - Funding:
This study was supported by a grant number 36913 from Sina
Trauma and Surgery Research Center, Tehran University of Medical
Sciences, Tehran, Iran.
Copyright © 2019 Chinese Medical Association. Production and hosting by Elsevier B.V. All rights reserved.
PY - 2019/10
Y1 - 2019/10
N2 - 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.
AB - 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.
U2 - 10.1016/j.cjtee.2019.05.003
DO - 10.1016/j.cjtee.2019.05.003
M3 - Article
C2 - 31445798
SN - 1008-1275
VL - 22
SP - 300
EP - 303
JO - Chinese Journal of Traumatology - English Edition
JF - Chinese Journal of Traumatology - English Edition
IS - 5
ER -