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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...
Autores principales: | , , , , , , , , , , , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
Elsevier
2019
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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. |
format | Online Article Text |
id | pubmed-6823677 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2019 |
publisher | Elsevier |
record_format | MEDLINE/PubMed |
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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