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Sustaining the National Spinal Cord Injury Registry of Iran (Nscir-Ir) in a Regional Center: Challenges and Solutions



Azadmanjir Z1, 2, 3 ; Mohtashamamiri Z4 ; Ziabari SM4 ; Kochakinejad L4 ; Haidari H4 ; Mohseni M4 ; Sabour H5 ; Khazaeipour Z5 ; Sharifalhoseini M1 ; Ghodsi Z1 ; Amirjamshidi A6 ; Akbarzadeh F4 ; Zendehdel K7 ; Azarhomayoun A1 Show All Authors
Authors
  1. Azadmanjir Z1, 2, 3
  2. Mohtashamamiri Z4
  3. Ziabari SM4
  4. Kochakinejad L4
  5. Haidari H4
  6. Mohseni M4
  7. Sabour H5
  8. Khazaeipour Z5
  9. Sharifalhoseini M1
  10. Ghodsi Z1
  11. Amirjamshidi A6
  12. Akbarzadeh F4
  13. Zendehdel K7
  14. Azarhomayoun A1
  15. Naghdi K1
  16. Oreilly G8
  17. Merete E9, 10
  18. Vaccaro AR11
  19. Benzel EC12
  20. Jazayeri SB13
  21. Rahimimovaghar V1, 5
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. National Inistitue for Medical Research Development (NIMAD), Tehran, Iran
  4. 4. Guilan Road Trauma Research Center (GRTRC), Guilan University of Medical Sciences, Rasht, Iran
  5. 5. Brain and Spinal Cord Injury Research Center, Neurosciences Institute, Tehran University of Medical Sciences, Tehran, Iran
  6. 6. Department of Neurosurgery, Sina Hospital, Tehran University of Medical Sciences, Tehran, Iran
  7. 7. Cancer Research Center, Cancer Institute, Tehran University of Medical Sciences, Tehran, Iran
  8. 8. Department of Epidemiology and Preventive Medicine, School of Public Health and Preventive Medicine, Monash University, Melbourne, Australia
  9. 9. Autonomic Unit, National Hospital for Neurology & Neurosurgery, Queen Square, London, United Kingdom
  10. 10. Institute of Neurology, University College London, London, United Kingdom
  11. 11. Department of Orthopaedic Surgery, The Rothman Institute, Thomas Jefferson University, Philadelphia, United States
  12. 12. Cleveland Clinic Foundation, Department of Neurosurgery, Cleveland, OH, United States
  13. 13. Department of Urology, University of Florida, Jacksonville, FL, United States

Source: Iranian Journal of Public Health Published:2020

Abstract

Background: The National Traumatic Spinal Cord Injury Registry in Iran (NSCIR-IR), was implemented initially in three hospitals as a pilot phase from 11 Oct 2015 to 19 Jun 2016 and has been active in eight centers from 19 Jun 2016. Poursina Hospital, a trauma care referral center in Rasht, Guilan Province of Iran is one of the registry sites, and has been involved in registering eligible patients since 1 Jan 2016. This study aimed to identify the challenges and solutions for sustaining the NSCIR-IR in a regional center. Methods: This was a mixed-methods study. For the quantitative analysis, a retrospective observational design was used to measure case capture or case identification rate, mapping cases in the registry against those eligible for registry inclusion amongst the register of hospital admissions. For the qualitative component, data was collected using focus group discus-sions and semi-structured interviews, followed by thematic analysis. Results: From 19 Jun 2016 to 24 Jan 2018, the proportion of case capture (case identification rate) was 17%. The median time between case identification and data entry to the system was 30.5 d (range: 2 to 193 d). Thematic analysis identified a lack of trained human resources as the most important cause of low case identification rate and delay in data completion. Conclusion: Recruitment and education to increase trained human resources are needed to improve case capture, the timeliness of data input and registry sustainability in a regional participating site. © 2020 Iranian Journal of Public Health. All rights reserved.