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. 2020 Mar 24;6(1):17.
doi: 10.1038/s41394-020-0265-x.

The data set development for the National Spinal Cord Injury Registry of Iran (NSCIR-IR): progress toward improving the quality of care

Zahra Azadmanjir  1   2 , Seyed Behzad Jazayeri  1   3 , Roya Habibi Arejan  1 , Zahra Ghodsi  1 , Mahdi Sharif-Alhoseini  1 , Ghazaleh Kheiri  4   5 , Kazem Zendehdel  6 , Mahdi Safdarian  1 , Farideh Sadeghian  1   7 , Zahra Khazaeipour  8 , Khatereh Naghdi  1 , Jalil Arab Kheradmand  9 , Soheil Saadat  1 , Habibollah Pirnejad  10 , Mohammad Reza Fazel  11 , Esmail Fakharian  11 , Mahdi Mohammadzadeh  11 , Mohsen Sadeghi-Naini  1   12 , Houshang Saberi  8   13 , Pegah Derakhshan  14 , Hadis Sabour  8 , Edward C Benzel  15 , Gerard Oreilly  16 , Vanessa Noonan  17 , Alexander R Vaccaro  18 , Seyed Hassan Emami-Razavi  8 , Vafa Rahimi-Movaghar  19   20   21
Affiliations

The data set development for the National Spinal Cord Injury Registry of Iran (NSCIR-IR): progress toward improving the quality of care

Zahra Azadmanjir et al. Spinal Cord Ser Cases. .

Abstract

Study design: Descriptive study.

Objectives: The aim of this manuscript is to describe the development process of the data set for the National Spinal Cord Injury Registry of Iran (NSCIR-IR).

Setting: SCI community in Iran.

Methods: The NSCIR-IR data set was developed in 8 months, from March 2015 to October 2015. An expert panel of 14 members was formed. After a review of data sets of similar registries in developed countries, the selection and modification of the basic framework were performed over 16 meetings, based on the objectives and feasibility of the registry.

Results: The final version of the data set was composed of 376 data elements including sociodemographic, hospital admission, injury incidence, prehospital procedures, emergency department visit, medical history, vertebral injury, spinal cord injury details, interventions, complications, and discharge data. It also includes 163 components of the International Standards for the Neurologic Classification of Spinal Cord Injury (ISNCSCI) and 65 data elements related to quality of life, pressure ulcers, pain, and spasticity.

Conclusion: The NSCIR-IR data set was developed in order to meet the quality improvement objectives of the registry. The process was centered around choosing the data elements assessing care provided to individuals in the acute and chronic phases of SCI in hospital settings. The International Spinal Cord Injury Data Set was selected as a basic framework, helped by comparison with data from other countries. Expert panel modifications facilitated the implementation of the registry process with the current clinical workflow in hospitals.

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Conflict of interest statement

The authors declare that they have no conflict of interest.

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