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Arch Iran Med. 2017 Aug;20(8):494-502.

Feasibility and Data Quality of the National Spinal Cord Injury Registry of Iran (NSCIR-IR): A Pilot Study.

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
Department of Neurosurgery, Sina Hospital, Tehran University of Medical Sciences, Tehran, Iran.
4
Ahya Neuroscience Research Center, Tehran, Iran.
5
Trauma Research Center, Kashan University of Medical Sciences, Kashan, Iran.
6
Cancer Research Center, Cancer Institute, Tehran University of Medical Sciences, Tehran, Iran.
7
Brain and Spinal Injuries Research Center (BASIR), Imam Khomeini Hospital, Tehran University of Medical Sciences, Tehran, Iran.
8
Department of Neurosurgery, Firoozgar General Hospital, Iran University of Medical Science, Tehran, Iran.
9
Guilan Road Trauma Research Center (GRTRC), Guilan University of Medical Sciences, Rasht, Iran.
10
Poursina Hospital, Guilan University of Medical Sciences, Rasht, Iran.
11
Department of Anesthesiology, Tehran University of Medical Sciences, Tehran, Iran.
12
Rick Hansen Institute, University of British Columbia, Vancouver, British Columbia, Canada.
13
Cleveland Clinic Foundation, Department of Neurosurgery, Cleveland, Ohio, United States of America.
14
Department of Epidemiology and Preventive Medicine, School of Public Health and Preventive Medicine, Monash University, Melbourne, Australia.
15
Swedish Neuroscience Institute, Swedish Medical Center, Seattle, Washington, USA.
16
Autonomic Unit, National Hospital for Neurology and Neurosurgery, Queen Square London, UK; Institute of Neurology, University College London, UK; Department of Neurology, Regional Hospital of Viborg, Viborg, Denmark; Department of Clinical Medicine Aarhus University, Aarhus, Denmark.
17
Toronto Western Hospital, University Health Network, Toronto, Ontario, Canada.
18
Department of Orthopaedic Surgery, the Rothman Institute, Thomas Jefferson University, Philadelphia, USA.
19
Department of Neurosurgery, Shariati Hospital, Tehran University of Medical Sciences, Tehran, Iran.
20
Cloudware Company, Ltd, Tehran, Iran.
21
Department of Neurosurgery, University of Maryland School of Medicine, Baltimore, Maryland, USA.

Abstract

BACKGROUND:

Spinal cord injury (SCI) is one of the most disabling consequences of trauma with unparalleled economic, social, and personal burden. Any attempt aimed at improving quality of care should be based on comprehensive and reliable data. This pilot investigation studied the feasibility of implementing the National Spinal Cord and Column Injury Registry of Iran (NSCIR-IR) and scrutinized the quality of the registered data.

METHODS:

From October 2015 to May 2016, over an 8-month period, 65 eligible trauma patients who were admitted to hospitals in three academic centers in mainland Iran were included in this pilot study. Certified registered nurses and neurosurgeons were in charge of data collection, quality verification, and registration.

RESULTS:

Sixty-five patients with vertebral column fracture dislocations were registered in the study, of whom 14 (21.5%) patients had evidence of SCI. Mechanisms of injury included mechanical falls in 30 patients (46.2%) and motor vehicle accidents in 29 (44.6%). The case identification rate i.e. clinical and radiographic confirmation of spine and SCI, ranged from 10.0% to 88.9% in different registry centers. The completion rate of all data items was 100%, except for five data elements in patients who could not provide clinical information because of their medical status. Consistency i.e. identification of the same elements by all the registrars, was 100% and accuracy of identification of the same pathology ranged from 66.6% to 100%.

CONCLUSIONS:

Our pilot study showed both the feasibility and acceptable data quality of the NSCIR-IR. However, effective and successful implementation of NSCIR-IR data use requires some modifications such as presence of a dedicated registrar in each center, verification of data by a neurosurgeon, and continuous assessment of patients' neurological status and complications.

PMID:
28846013
[Indexed for MEDLINE]

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