Good validity of the international spinal cord injury quality of life basic data set

Post, Marcel W M; Adriaansen, Jacinthe J E; Charlifue, Susan; Biering‐Sørensen, Fin; Asbeck, F

doi:10.1038/sc.2015.99

Cited by 47 publications

(48 citation statements)

References 20 publications

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“…2 Information about these differences helps health policy makers make more efficient decisions for that region. 13 The obtained data may be of benefit for developing and even developed countries. 8 Most epidemiological studies on TSCI give an estimation for disease prevalence or incidence in their target population.…”

Section: Discussionmentioning

confidence: 99%

“…11 These complications make TSCI among the most costly human maladies; 12 therefore, their epidemiological evaluation is a necessity for proper health-care planning. 13 Furthermore, social impacts of TSCI should be addressed for the caregivers and health policy makers for better strategic planning. 14 As a result, further indepth evaluation of TSCI characteristics in Iran in a greater scale is a necessity.…”

Section: Introductionmentioning

confidence: 99%

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Epidemiological study of traumatic spinal cord injuries: experience from a specialized spine center in Iran

et al. 2016

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Epidemiological study of traumatic spinal cord injuries: experience from a specialized spine center in Iran

et al. 2016

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“…Recently, the International SCI QoL Basic Data Set was developed and validated for the use in individuals with SCI. 32,33 The data set includes three items that assess satisfaction with life as a whole, satisfaction with physical health and satisfaction with psychological health during the past 4 weeks. Future research using these items in samples of individuals with SCI and chronic pain would help determine the reliability of the findings presented here.…”

Section: Discussionmentioning

confidence: 99%

A prospective study of pain and psychological functioning following traumatic spinal cord injury

et al. 2016

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“…Similar to the reliability testing occurring with the International SCI Data Sets 63-65 as outlined by Biering-Sørensen et al 66 , changes to the NINDS CDEs will be based on evidence and reviewed first by experts in the field. In keeping with the established collaborative effort, recommendations for additions or revisions to the NINDS CDEs will be subsequently discussed by the NINDS Oversight Committee in collaboration with the International SCI Data Set Committee to ensure continued alignment.…”

Section: Navigating the Ninds Cde Sci Websitementioning

confidence: 99%

Common data elements for spinal cord injury clinical research: a National Institute for Neurological Disorders and Stroke project

et al. 2015

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Objective To develop a comprehensive set of common data elements (CDEs), data definitions, case report forms and guidelines for use in spinal cord injury (SCI) clinical research, as part of the CDE project at the National Institute of Neurological Disorders and Stroke (NINDS) of the USA National Institutes of Health. Setting International Working Groups Methods Nine working groups composed of international experts reviewed existing CDEs and instruments, created new elements when needed, and provided recommendations for SCI clinical research. The project was carried out in collaboration with and cross-referenced to development of the International Spinal Cord Society (ISCoS) International SCI Data Sets. The recommendations were compiled, subjected to internal review, and posted online for external public comment. The final version was reviewed by all working groups and the NINDS CDE team prior to release. Results The NINDS SCI CDEs and supporting documents are publically available on the NINDS CDE website and the ISCoS website. The CDEs span the continuum of SCI care and the full range of domains of the International Classification of Functioning, Disability and Health. Conclusions Widespread use of common data elements can facilitate SCI clinical research and trial design, data sharing, and retrospective analyses. Continued international collaboration will enable consistent data collection and reporting, and will help ensure that the data elements are updated, reviewed and broadcast as additional evidence is obtained.

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Good validity of the international spinal cord injury quality of life basic data set

Cited by 47 publications

References 20 publications

Epidemiological study of traumatic spinal cord injuries: experience from a specialized spine center in Iran

Epidemiological study of traumatic spinal cord injuries: experience from a specialized spine center in Iran

A prospective study of pain and psychological functioning following traumatic spinal cord injury

Common data elements for spinal cord injury clinical research: a National Institute for Neurological Disorders and Stroke project

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