National Spinal Cord Injury Registry of Iran (NSCIR-IR) - a critical appraisal of its strengths and weaknesses.
10.1016/j.cjtee.2019.05.003
- Author:
Mahdi SHARIF-ALHOSEINI
1
;
Zahra AZADMANJIR
2
;
Mohsen SADEGHI-NAINI
1
;
Zahra GHODSI
1
;
Khatereh NAGHDI
1
;
Mahdi MOHAMMADZADEH
3
;
Amir AZARHOMAYOUN
1
;
Kazem ZENDEHDEL
4
;
Moein KHORMALI
5
,
6
;
Farideh SADEGHIAN
7
;
Seyed Behzad JAZAYERI
1
;
Mojtaba SEHAT
3
;
Habibollah PIRNEJAD
8
;
Edward C BENZEL
9
;
Gerard O'REILLY
10
;
Michael G FEHLINGS
11
;
Alexander R VACCARO
12
;
Vafa RAHIMI-MOVAGHAR
5
,
13
Author Information
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. Trauma Research Center, Kashan University of Medical Sciences, Kashan, Iran.
4. Cancer Research Center, Cancer Institute, Tehran University of Medical Sciences, Tehran, Iran.
5. Sina Trauma and Surgery Research Center, Tehran University of Medical Sciences, Tehran, Iran
6. Students' Scientific Research Center, Tehran University of Medical Sciences, Tehran, Iran.
7. Center for Health Related Social and Behavioral Sciences Research, Shahroud University of Medical Sciences, Shahroud, Iran.
8. Department of Health Information Technology, Urmia University of Medical Sciences, Urmia, Iran.
9. Cleveland Clinic Foundation, Department of Neurosurgery, Cleveland, OH, USA.
10. Department of Epidemiology and Preventive Medicine, School of Public Health and Preventive Medicine, Monash University, Melbourne, Australia.
11. Toronto Western Hospital, University Health Network, Toronto, Ontario, Canada.
12. Department of Orthopaedic Surgery, The Rothman Institute, Thomas Jefferson University, Philadelphia, USA.
13. Brain and Spinal Cord Injury Research Center, Neuroscience Institute, Tehran University of Medical Sciences, Tehran, Iran. Electronic address: v_rahimi@tums.ac.ir.
- Publication Type:Journal Article
- Keywords:
Data accuracy;
Injury registries;
Iran;
Spinal cord injuries
- From:
Chinese Journal of Traumatology
2019;22(5):300-303
- CountryChina
- Language:English
-
Abstract:
The National Spinal Cord Injury Registry of Iran (NSCIR-IR) is a not-for-profit, hospital-based, and prospective observational registry that appraises the quality of care, long-term outcomes and the personal and psychological burden of traumatic spinal cord injury in Iran. Benchmarking validity in every registry includes rigorous attention to data quality. Data quality assurance is essential for any registry to make sure that correct patients are being enrolled and that the data being collected are valid. We reviewed strengths and weaknesses of the NSCIR-IR while considering the methodological guidelines and recommendations for efficient and rational governance of patient registries. In summary, the steering committee, funded and maintained by the Ministry of Health and Medical Education of Iran, the international collaborations, continued staff training, suitable data quality, and the ethical approval are considered to be the strengths of the registry, while limited human and financial resources, poor interoperability with other health systems, and time-consuming processes are among its main weaknesses.
