Zahra Azadmanjir1,2, Seyed Behzad Jazayeri1,3, Roya Habibi Arejan1, Zahra Ghodsi1, Mahdi Sharif-Alhoseini1, Ghazaleh Kheiri4,5, Kazem Zendehdel6, Mahdi Safdarian1, Farideh Sadeghian1,7, Zahra Khazaeipour8, Khatereh Naghdi1, Jalil Arab Kheradmand9, Soheil Saadat1, Habibollah Pirnejad10, Mohammad Reza Fazel11, Esmail Fakharian11, Mahdi Mohammadzadeh11, Mohsen Sadeghi-Naini1,12, Houshang Saberi8,13, Pegah Derakhshan14, Hadis Sabour8, Edward C Benzel15, Gerard Oreilly16, Vanessa Noonan17, Alexander R Vaccaro18, Seyed Hassan Emami-Razavi8, Vafa Rahimi-Movaghar19,20,21. 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. Department of Urology, University of Florida, Jacksonville, FL, USA. 4. School of Medicine, Tehran University of Medical Sciences, Tehran, Iran. 5. Student's Scientific Research Center (SSRC), Tehran University of Medical Sciences, Tehran, Iran. 6. Cancer Research Center, Cancer Institute, Tehran University of Medical Sciences, Tehran, Iran. 7. Center for Health Related Social and Behavioral Science Research, Shahroud University of Medical Sciences, Shahroud, Iran. 8. Brain and Spinal Cord Injury Research Center, Neuroscience Institute, Tehran University of Medical Sciences, Tehran, Iran. 9. Ahya Neuroscience Research Center, Tehran, Iran. 10. Health Information Technology Department, Urmia University of Medical Sciences, Urmia, Iran. 11. Trauma Research Center, Kashan University of Medical Sciences, Kashan, Iran. 12. Shahid Beheshti University of Medical Science, Tehran, Iran. 13. Department of Neurosurgery Imam Khomeini Hospital, Tehran University of Medical Sciences, Tehran, Iran. 14. Student Research Committee, School of Medicine, Iran University of Medical Sciences, Tehran, Iran. 15. Department of Neurosurgery, Cleveland Clinic Foundation, Cleveland, OH, USA. 16. Department of Epidemiology and Preventive Medicine, School of Public Health and Preventive Medicine, Monash University, Melbourne, Australia. 17. Rick Hansen Institute, University of British Columbia, Vancouver, BC, Canada. 18. Department of Orthopedic Surgery, Rothman Institute, Thomas Jefferson University, Philadelphia, PA, USA. 19. Sina Trauma and Surgery Research Center, Tehran University of Medical Sciences, Tehran, Iran. v_rahimi@yahoo.com. 20. Brain and Spinal Cord Injury Research Center, Neuroscience Institute, Tehran University of Medical Sciences, Tehran, Iran. v_rahimi@yahoo.com. 21. Department of Neurosurgery, Shariati Hospital, Tehran University of Medical Sciences, Tehran, Iran. v_rahimi@yahoo.com.
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.
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.
Authors: Katherine Pérez; Ana M Novoa; Elena Santamariña-Rubio; Yislenz Narvaez; Vita Arrufat; Carme Borrell; Elena Cabeza; Eva Cirera; Josep Ferrando; Anna García-Altés; Juan Carlos Gonzalez-Luque; Vicenta Lizarbe; Carlos Martin-Cantera; María Seguí-Gómez; Josep M Suelves Journal: Accid Anal Prev Date: 2012-01-20
Authors: Brian Lenehan; John Street; Brian K Kwon; Vanessa Noonan; Hongbin Zhang; Charles G Fisher; Marcel F Dvorak Journal: Spine (Phila Pa 1976) Date: 2012-02-15 Impact factor: 3.468
Authors: Maziar Moradi-Lakeh; Mohammad R Rasouli; Alexander R Vaccaro; Soheil Saadat; Mohammad R Zarei; Vafa Rahimi-Movaghar Journal: BMC Public Health Date: 2011-10-11 Impact factor: 3.295