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National Spinal Cord Injury Registry of Iran (Nscir-Ir) – a Critical Appraisal of Its Strengths and Weaknesses Publisher Pubmed



Sharifalhoseini M1 ; Azadmanjir Z2 ; Sadeghinaini M1 ; Ghodsi Z1 ; Naghdi K1 ; Mohammadzadeh M3 ; Azarhomayoun A1 ; Zendehdel K4 ; Khormali M1, 5 ; Sadeghian F6 ; Jazayeri SB1 ; Sehat M3 ; Pirnejad H7 ; Benzel EC8 Show All Authors
Authors
  1. Sharifalhoseini M1
  2. Azadmanjir Z2
  3. Sadeghinaini M1
  4. Ghodsi Z1
  5. Naghdi K1
  6. Mohammadzadeh M3
  7. Azarhomayoun A1
  8. Zendehdel K4
  9. Khormali M1, 5
  10. Sadeghian F6
  11. Jazayeri SB1
  12. Sehat M3
  13. Pirnejad H7
  14. Benzel EC8
  15. Oreilly G9
  16. Fehlings MG10
  17. Vaccaro AR11
  18. Rahimimovaghar V1, 12
Show Affiliations
Authors Affiliations
  1. 1. Sina Trauma and Surgery Research Center, Tehran University of Medical Sciences, Tehran, Iran
  2. 2. Department of Health Information Management, School of Allied Medical Sciences, Tehran University of Medical Sciences, Tehran, Iran
  3. 3. Trauma Research Center, Kashan University of Medical Sciences, Kashan, Iran
  4. 4. Cancer Research Center, Cancer Institute, Tehran University of Medical Sciences, Tehran, Iran
  5. 5. Students' Scientific Research Center, Tehran University of Medical Sciences, Tehran, Iran
  6. 6. Center for Health Related Social and Behavioral Sciences Research, Shahroud University of Medical Sciences, Shahroud, Iran
  7. 7. Department of Health Information Technology, Urmia University of Medical Sciences, Urmia, Iran
  8. 8. Cleveland Clinic Foundation, Department of Neurosurgery, Cleveland, OH, United States
  9. 9. Department of Epidemiology and Preventive Medicine, School of Public Health and Preventive Medicine, Monash University, Melbourne, Australia
  10. 10. Toronto Western Hospital, University Health Network, Toronto, Ontario, Canada
  11. 11. Department of Orthopaedic Surgery, The Rothman Institute, Thomas Jefferson University, Philadelphia, United States
  12. 12. Brain and Spinal Cord Injury Research Center, Neuroscience Institute, Tehran University of Medical Sciences, Tehran, Iran

Source: Chinese Journal of Traumatology - English Edition Published:2019


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 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. © 2019 Chinese Medical Association