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

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 e...

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Autores principales: 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
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Elsevier 2019
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6823677/
https://www.ncbi.nlm.nih.gov/pubmed/31445798
http://dx.doi.org/10.1016/j.cjtee.2019.05.003
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author 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
author_facet 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
author_sort Sharif-Alhoseini, Mahdi
collection PubMed
description 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.
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spelling pubmed-68236772019-11-06 National Spinal Cord Injury Registry of Iran (NSCIR-IR) – a critical appraisal of its strengths and weaknesses 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 Chin J Traumatol Short Communication 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. Elsevier 2019-10 2019-07-13 /pmc/articles/PMC6823677/ /pubmed/31445798 http://dx.doi.org/10.1016/j.cjtee.2019.05.003 Text en © 2019 Chinese Medical Association. Production and hosting by Elsevier B.V. http://creativecommons.org/licenses/by-nc-nd/4.0/ This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/).
spellingShingle Short Communication
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
National Spinal Cord Injury Registry of Iran (NSCIR-IR) – a critical appraisal of its strengths and weaknesses
title National Spinal Cord Injury Registry of Iran (NSCIR-IR) – a critical appraisal of its strengths and weaknesses
title_full National Spinal Cord Injury Registry of Iran (NSCIR-IR) – a critical appraisal of its strengths and weaknesses
title_fullStr National Spinal Cord Injury Registry of Iran (NSCIR-IR) – a critical appraisal of its strengths and weaknesses
title_full_unstemmed National Spinal Cord Injury Registry of Iran (NSCIR-IR) – a critical appraisal of its strengths and weaknesses
title_short National Spinal Cord Injury Registry of Iran (NSCIR-IR) – a critical appraisal of its strengths and weaknesses
title_sort national spinal cord injury registry of iran (nscir-ir) – a critical appraisal of its strengths and weaknesses
topic Short Communication
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6823677/
https://www.ncbi.nlm.nih.gov/pubmed/31445798
http://dx.doi.org/10.1016/j.cjtee.2019.05.003
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