The data set development for the National Spinal Cord Injury Registry of Iran (NSCIR-IR): progress toward improving the quality of care

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.

Designing a minimum data set for the information management system (registry) of spinal canal stenosis: An applied‐descriptive study

“…It also eases the sharing and comparing data across various healthcare centers, as well as designing electronic health records of patients 18 . In addition, MDS is a valuable source of information in improving patient care 14 and for registry and reporting systems 19,20 …”

“…18 In addition, MDS is a valuable source of information in improving patient care 14 and for registry and reporting systems. 19,20 The proper selection of data elements is a major reason for the success or failure of registry systems. 20 Through precise definitions of data elements, MDS should create a common language among all entities who are involved in registry and recording.…”

Posttraumatic ascending myelopathy after spinal cord injury in a young man: A case report

“…The prevalence of this condition is also reported to be in a range of 440.0–526.0 per million general population 1 . Moreover, the prevalence of SCI in Iran is estimated to be 90.0 per million people 3 …”

“…1 Moreover, the prevalence of SCI in Iran is estimated to be 90.0 per million people. 3 Besides the above-mentioned problems and burdens, there is no curative treatment for SCI and the treatment is usually supportive. Moreover, different neurological deterioration may happen irrelevant to the primary spine instability.…”

The need for an Australasian burns critical care standardised data collection tool

“…There 8 The approach to selecting the data elements for inclusion could employ the Delphi method, as utilised by other groups dealing with specific patient cohorts. [12][13][14] We propose that a feasibility or pilot collection should then be undertaken over a 12-month period to ensure the development of a useful critical care burns data collection tool. This should include the standardisation of the burns registry function, a minimum dataset, a data dictionary, and uniform data quality monitoring and reporting.…”