Feasibility and data quality of the national spinal cord injury registry of Iran (NSCIR-IR): A pilot study

Khatereh Naghdi, Zahra Azadmanjir, Soheil Saadat, Aidin Abedi, Sahar Koohi Habibi, Pegah Derakhshan, Mahdi Safdarian, Shayan Abdollah Zadegan, Abbas Amirjamshidi, Mahdi Sharif-Alhoseini, Jalil Arab Kheradmand, Mahdi Mohammadzadeh, Kazem Zendehdel, Zahra Khazaeipour, Seyed Mahmood Ramak Hashemi, Hooshang Saberi, Kourosh Karimi Yarandi, Seyed Ebrahim Ketabchi, Shahrokh Yousefzadeh-Chabok, Hamid HeidariArezo Sotodeh, Khalil Pestei, Zahra Ghodsi, Farideh Sadeghian, Vanessa Noonan, Edward C. Benzel, Gerard Oreilly, Jens Chapman, Ellen Merete Hagen, Michael G. Fehlings, Alexander R. Vaccaro, Morteza Faghih Jooybari, Mohammad Reza Zarei, Mohammad Reza Zafarghandi, Payman Salamati, Saeed Nezareh, Moein Khormali, Mohsen Sadeghi-Naini, Seyed Behzad Jazayeri, Bizhan Aarabi, Vafa Rahimi-Movaghar

Research output: Contribution to journalArticleResearchpeer-review

5 Citations (Scopus)

Abstract

Background: Spinal cord injury (SCI) is one of the most disabling consequences of trauma with unparalleled economic, social, and personal burden. Any attempt aimed at improving quality of care should be based on comprehensive and reliable data. This pilot investigation studied the feasibility of implementing the National Spinal Cord and Column Injury Registry of Iran (NSCIR-IR) and scrutinized the quality of the registered data. Methods: From October 2015 to May 2016, over an 8-month period, 65 eligible trauma patients who were admitted to hospitals in three academic centers in mainland Iran were included in this pilot study. Certified registered nurses and neurosurgeons were in charge of data collection, quality verification, and registration. Results: Sixty-five patients with vertebral column fracture dislocations were registered in the study, of whom 14 (21.5%) patients had evidence of SCI. Mechanisms of injury included mechanical falls in 30 patients (46.2%) and motor vehicle accidents in 29 (44.6%). The case identification rate i.e. clinical and radiographic confirmation of spine and SCI, ranged from 10.0% to 88.9% in different registry centers. The completion rate of all data items was 100%, except for five data elements in patients who could not provide clinical information because of their medical status. Consistency i.e. identification of the same elements by all the registrars, was 100% and accuracy of identification of the same pathology ranged from 66.6% to 100%. Conclusions: Our pilot study showed both the feasibility and acceptable data quality of the NSCIR-IR. However, effective and successful implementation of NSCIR-IR data use requires some modifications such as presence of a dedicated registrar in each center, verification of data by a neurosurgeon, and continuous assessment of patients’ neurological status and complications.

Original languageEnglish
Pages (from-to)494-502
Number of pages9
JournalArchives of Iranian Medicine
Volume20
Issue number8
Publication statusPublished - Aug 2017

Keywords

  • Nervous system
  • Registries
  • Spinal cord injuries
  • Spinal fractures
  • Trauma

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