TY - JOUR
T1 - The data set development for the National Spinal Cord Injury Registry of Iran (NSCIR-IR)
T2 - progress toward improving the quality of care
AU - Azadmanjir, Zahra
AU - Jazayeri, Seyed Behzad
AU - Habibi Arejan, Roya
AU - Ghodsi, Zahra
AU - Sharif-Alhoseini, Mahdi
AU - Kheiri, Ghazaleh
AU - Zendehdel, Kazem
AU - Safdarian, Mahdi
AU - Sadeghian, Farideh
AU - Khazaeipour, Zahra
AU - Naghdi, Khatereh
AU - Arab Kheradmand, Jalil
AU - Saadat, Soheil
AU - Pirnejad, Habibollah
AU - Fazel, Mohammad Reza
AU - Fakharian, Esmail
AU - Mohammadzadeh, Mahdi
AU - Sadeghi-Naini, Mohsen
AU - Saberi, Houshang
AU - Derakhshan, Pegah
AU - Sabour, Hadis
AU - Benzel, Edward C
AU - Oreilly, Gerard
AU - Noonan, Vanessa
AU - Vaccaro, Alexander R
AU - Emami-Razavi, Seyed Hassan
AU - Rahimi-Movaghar, Vafa
N1 - Funding;
NSCIR-IR has been financially supported by Deputy of
Research and Technology, Ministry of Health and Medical Education
(MOHME) of Iran.
PY - 2020/3/24
Y1 - 2020/3/24
N2 - 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.
AB - 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.
UR - https://www.webofscience.com/api/gateway?GWVersion=2&SrcApp=eur_pure&SrcAuth=WosAPI&KeyUT=WOS:000706367300001&DestLinkType=FullRecord&DestApp=WOS
U2 - 10.1038/s41394-020-0265-x
DO - 10.1038/s41394-020-0265-x
M3 - Article
C2 - 32210224
SN - 2058-6124
VL - 6
JO - Spinal cord series and cases
JF - Spinal cord series and cases
IS - 1
ER -