TY  - JOUR
PY  - 2020//
TI  - The data set development for the National Spinal Cord Injury Registry of Iran (NSCIR-IR): progress toward improving the quality of care
JO  - Spinal cord series and cases
A1  - Azadmanjir, Zahra
A1  - Jazayeri, Seyed Behzad
A1  - Habibi Arejan, Roya
A1  - Ghodsi, Zahra
A1  - Sharif-Alhoseini, Mahdi
A1  - Kheiri, Ghazaleh
A1  - Zendehdel, Kazem
A1  - Safdarian, Mahdi
A1  - Sadeghian, Farideh
A1  - Khazaeipour, Zahra
A1  - Naghdi, Khatereh
A1  - Arab Kheradmand, Jalil
A1  - Saadat, Soheil
A1  - Pirnejad, Habibollah
A1  - Fazel, Mohammad Reza
A1  - Fakharian, Esmail
A1  - Mohammadzadeh, Mahdi
A1  - Sadeghi-Naini, Mohsen
A1  - Saberi, Houshang
A1  - Derakhshan, Pegah
A1  - Sabour, Hadis
A1  - Benzel, Edward C.
A1  - Oreilly, Gerard
A1  - Noonan, Vanessa
A1  - Vaccaro, Alexander R.
A1  - Emami-Razavi, Seyed Hassan
A1  - Rahimi-Movaghar, Vafa
SP  - e17
EP  - e17
VL  - 6
IS  - 1
N2  - STUDY DESIGN: Descriptive study. <br><br>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. <br><br>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. <br><br>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. <br><br>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.<p />  <p>Language: en</p>
LA  - en
SN  - 2058-6124
UR  - http://dx.doi.org/10.1038/s41394-020-0265-x
ID  - ref1
ER  -