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

F. Biering-Sørensen; S. Alai; K. Anderson; S. Charlifue; Y. Chen; M. DeVivo; A. E. Flanders; L. Jones; N. Kleitman; A. Lans; V. K. Noonan; J. Odenkirchen; J. Steeves; K. Tansey; E. Widerström-Noga; L. B. Jakeman

doi:10.1038/sc.2014.246

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

F. Biering-Sørensen, S. Alai, K. Anderson, S. Charlifue, Y. Chen, M. DeVivo, A. E. Flanders, L. Jones, N. Kleitman, A. Lans, V. K. Noonan, J. Odenkirchen, J. Steeves, K. Tansey, E. Widerström-Noga, L. B. Jakeman

Neurological Surgery

Research output: Contribution to journal › Review article › peer-review

60 Scopus citations

Abstract

Objectives: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 US 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 before 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.Conclusion:Widespread use of CDEs 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.

Original language	English (US)
Pages (from-to)	265-277
Number of pages	13
Journal	Spinal Cord
Volume	53
Issue number	4
DOIs	https://doi.org/10.1038/sc.2014.246
State	Published - Apr 15 2015

ASJC Scopus subject areas

Neurology
Clinical Neurology

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10.1038/sc.2014.246

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Biering-Sørensen, F., Alai, S., Anderson, K., Charlifue, S., Chen, Y., DeVivo, M., Flanders, A. E., Jones, L., Kleitman, N., Lans, A., Noonan, V. K., Odenkirchen, J., Steeves, J., Tansey, K., Widerström-Noga, E., & Jakeman, L. B. (2015). Common data elements for spinal cord injury clinical research: A National Institute for Neurological Disorders and Stroke project. Spinal Cord, 53(4), 265-277. https://doi.org/10.1038/sc.2014.246

Common data elements for spinal cord injury clinical research : A National Institute for Neurological Disorders and Stroke project. / Biering-Sørensen, F.; Alai, S.; Anderson, K.; Charlifue, S.; Chen, Y.; DeVivo, M.; Flanders, A. E.; Jones, L.; Kleitman, N.; Lans, A.; Noonan, V. K.; Odenkirchen, J.; Steeves, J.; Tansey, K.; Widerström-Noga, E.; Jakeman, L. B.

In: Spinal Cord, Vol. 53, No. 4, 15.04.2015, p. 265-277.

Research output: Contribution to journal › Review article › peer-review

Biering-Sørensen, F, Alai, S, Anderson, K, Charlifue, S, Chen, Y, DeVivo, M, Flanders, AE, Jones, L, Kleitman, N, Lans, A, Noonan, VK, Odenkirchen, J, Steeves, J, Tansey, K, Widerström-Noga, E & Jakeman, LB 2015, 'Common data elements for spinal cord injury clinical research: A National Institute for Neurological Disorders and Stroke project', Spinal Cord, vol. 53, no. 4, pp. 265-277. https://doi.org/10.1038/sc.2014.246

Biering-Sørensen, F. ; Alai, S. ; Anderson, K. ; Charlifue, S. ; Chen, Y. ; DeVivo, M. ; Flanders, A. E. ; Jones, L. ; Kleitman, N. ; Lans, A. ; Noonan, V. K. ; Odenkirchen, J. ; Steeves, J. ; Tansey, K. ; Widerström-Noga, E. ; Jakeman, L. B. / Common data elements for spinal cord injury clinical research : A National Institute for Neurological Disorders and Stroke project. In: Spinal Cord. 2015 ; Vol. 53, No. 4. pp. 265-277.

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title = "Common data elements for spinal cord injury clinical research: A National Institute for Neurological Disorders and Stroke project",

abstract = "Objectives: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 US 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 before 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.Conclusion:Widespread use of CDEs 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.",

author = "F. Biering-S{\o}rensen and S. Alai and K. Anderson and S. Charlifue and Y. Chen and M. DeVivo and Flanders, {A. E.} and L. Jones and N. Kleitman and A. Lans and Noonan, {V. K.} and J. Odenkirchen and J. Steeves and K. Tansey and E. Widerstr{\"o}m-Noga and Jakeman, {L. B.}",

note = "Funding Information: The views expressed here are those of the authors and do not represent those of the National Institutes of Health (NIH), the National Institute of Neurological Disorders and Stroke (NINDS) or the US Government. Logistics support for this project was provided in part through NIH Contract HHSN271201200034C. The development of the NINDS SCI CDEs was made possible thanks to the great investment of time and effort of all organizing committee and WG members and members of the NINDS CDE Project team, participating from 2007 to 2014.",

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AU - Biering-Sørensen, F.

AU - Alai, S.

AU - Anderson, K.

AU - Charlifue, S.

AU - Chen, Y.

AU - DeVivo, M.

AU - Flanders, A. E.

AU - Jones, L.

AU - Kleitman, N.

AU - Lans, A.

AU - Noonan, V. K.

AU - Odenkirchen, J.

AU - Steeves, J.

AU - Tansey, K.

AU - Widerström-Noga, E.

AU - Jakeman, L. B.

N1 - Funding Information: The views expressed here are those of the authors and do not represent those of the National Institutes of Health (NIH), the National Institute of Neurological Disorders and Stroke (NINDS) or the US Government. Logistics support for this project was provided in part through NIH Contract HHSN271201200034C. The development of the NINDS SCI CDEs was made possible thanks to the great investment of time and effort of all organizing committee and WG members and members of the NINDS CDE Project team, participating from 2007 to 2014.

PY - 2015/4/15

Y1 - 2015/4/15

N2 - Objectives: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 US 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 before 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.Conclusion:Widespread use of CDEs 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.

AB - Objectives: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 US 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 before 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.Conclusion:Widespread use of CDEs 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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Common data elements for spinal cord injury clinical research: A National Institute for Neurological Disorders and Stroke project

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