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Azadmanjir Z, Mohtasham-Amiri Z, Ziabari SM, et al. Sustaining the National Spinal Cord Injury Registry of Iran (NSCIR-IR) in a Regional Center: Challenges and Solutions. Iran J Public Health. 2020;49(4):736-743
Azadmanjir, Z., Mohtasham-Amiri, Z., Ziabari, S. M., Kochakinejad, L., Haidari, H., Mohseni, M., Sabour, H., Khazaeipour, Z., Sharif-Alhoseini, M., Ghodsi, Z., Amirjamshidi, A., Akbarzadeh, F., Zendehdel, K., Azarhomayoun, A., Naghdi, K., Oreilly, G., Merete, E., Vaccaro, A. R., Benzel, E. C., Jazayeri, S. B., & Rahimi-Movaghar, V. (2020). Sustaining the National Spinal Cord Injury Registry of Iran (NSCIR-IR) in a Regional Center: Challenges and Solutions. Iranian journal of public health, 49(4), 736-743.
Azadmanjir, Zahra, et al. "Sustaining the National Spinal Cord Injury Registry of Iran (NSCIR-IR) in a Regional Center: Challenges and Solutions." Iranian journal of public health vol. 49,4 (2020): 736-743.
Azadmanjir Z, Mohtasham-Amiri Z, Ziabari SM, Kochakinejad L, Haidari H, Mohseni M, Sabour H, Khazaeipour Z, Sharif-Alhoseini M, Ghodsi Z, Amirjamshidi A, Akbarzadeh F, Zendehdel K, Azarhomayoun A, Naghdi K, Oreilly G, Merete E, Vaccaro AR, Benzel EC, Jazayeri SB, Rahimi-Movaghar V. Sustaining the National Spinal Cord Injury Registry of Iran (NSCIR-IR) in a Regional Center: Challenges and Solutions. Iran J Public Health. 2020 Apr;49(4):736-743. PMID: 32548054; PMCID: PMC7283190.
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Iran J Public Health. 2020 Apr;49(4):736-743.

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

Iranian journal of public health

Zahra Azadmanjir, Zahra Mohtasham-Amiri, Seyed-Mahdi Ziabari, Leila Kochakinejad, Hamid Haidari, Mina Mohseni, Hadis Sabour, Zahra Khazaeipour, Mahdi Sharif-Alhoseini, Zahra Ghodsi, Abbas Amirjamshidi, Farshad Akbarzadeh, Kazem Zendehdel, Amir Azarhomayoun, Khatereh Naghdi, Gerard Oreilly, Ellen Merete, Alexander R Vaccaro, Edward C Benzel, Seyed Behzad Jazayeri, Vafa Rahimi-Movaghar

Affiliations

  1. Sina Trauma and Surgery Research Center, Tehran University of Medical Sciences, Tehran, Iran.
  2. Department of Health Information Management, School of Allied Medical Sciences, Tehran University of Medical Sciences, Tehran, Iran.
  3. National Inistitue for Medical Research Development (NIMAD), Tehran, Iran.
  4. Guilan Road Trauma Research Center (GRTRC), Guilan University of Medical Sciences, Rasht, Iran.
  5. Brain and Spinal Cord Injury Research Center, Neurosciences Institute, Tehran University of Medical Sciences, Tehran, Iran.
  6. Department of Neurosurgery, Sina Hospital, Tehran University of Medical Sciences, Tehran, Iran.
  7. Cancer Research Center, Cancer Institute, Tehran University of Medical Sciences, Tehran, Iran.
  8. Department of Epidemiology and Preventive Medicine, School of Public Health and Preventive Medicine, Monash University, Melbourne, Australia.
  9. Autonomic Unit, National Hospital for Neurology & Neurosurgery, Queen Square, London, UK.
  10. Institute of Neurology, University College London, London, UK.
  11. Department of Orthopaedic Surgery, The Rothman Institute, Thomas Jefferson University, Philadelphia, USA.
  12. Cleveland Clinic Foundation, Department of Neurosurgery, Cleveland, Ohio, USA.
  13. Department of Urology, University of Florida, Jacksonville, FL, USA.

PMID: 32548054 PMCID: PMC7283190

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 discussions 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.

Copyright © Iranian Public Health Association & Tehran University of Medical Sciences.

Keywords: Disease registries; Iran; Spinal cord; Trauma

Conflict of interest statement

Conflict of interests Alexander R Vaccaro has these conflicts of interest: Receipt of Royalty Payments of Elseviere; Thieme; Atlas Spine and Jaypee, Stock / Stock Option Ownership Interests for Frankl

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