SCI Standards - NINDS Common Data Elements

Spinal Cord Injury CDE Standards

The purpose of the International Spinal Cord Injury (SCI) data sets has been described in previous publications (1-8) and appears on the Web sites of the International Spinal Cord Society (ISCoS) and the American Spinal Injury Association (ASIA). Staff members from the NINDS CDE Team (NINDS Program Directors along with their contractor, KAI Research, Inc.), approached The Executive Committee of the International SCI Standards and Data Sets committees (ECSCI) after they became aware of the work performed by the various SCI data set working groups. The two groups have since collaborated to incorporate the International SCI data sets into the NINDS CDEs. The SCI CDE recommendations they have jointly developed provide consistent variable names for the data elements included in the data sets and proposed structures for relational data tables. (9) The SCI CDE recommendations should facilitate the adoption of these variables for use by both clinicians and researchers who are in the process of developing projects or databases. Furthermore, the free access to these variables will give researchers and clinicians the possibility to avoid starting from scratch to reinvent variables for their questionnaires or databases.

Data Standards

The SCI CDE recommendations include the data sets listed below. The References section includes publications that describe the development of these data sets.

International SCI Core Data Set

International SCI Core Data Set
CDEs	CRF Module or Guideline	Annotated Form
	American Spinal Injury Association	95KB

International SCI Lower Urinary Tract Basic Data Set

International SCI Lower Urinary Tract Basic Data Set
CDEs	CRF Module or Guideline	Annotated Form
	American Spinal Injury Association	220KB

International SCI Urodynamic Basic Data Set

International SCI Urodynamic Basic Data Set
CDEs	CRF Module or Guideline	Annotated Form
	American Spinal Injury Association	110KB

International SCI Urinary Tract Imaging Basic Data Set

International SCI Urinary Tract Imaging Basic Data Set
CDEs	CRF Module or Guideline	Annotated Form
	American Spinal Injury Association	166KB

International SCI Bowel Function Basic Data Set

International SCI Bowel Function Basic Data Set
CDEs	CRF Module or Guideline	Annotated Form
	American Spinal Injury Association	128KB

International SCI Bowel Function Extended Data Set

International SCI Bowel Function Extended Data Set
CDEs	CRF Module or Guideline	Annotated Form
	American Spinal Injury Association	142KB

International SCI Female Sexual and Reproductive Function Basic Data Set

International SCI Female Sexual and Reproductive Function Basic Data Set
CDEs	CRF Module or Guideline	Annotated Form
Coming Soon	American Spinal Injury Association	Coming Soon

International SCI Male Sexual Function Basic Data Set

International SCI Male Sexual Function Basic Data Set
CDEs	CRF Module or Guideline	Annotated Form
Coming Soon	American Spinal Injury Association	Coming Soon

International SCI Pain Basic Data Set

International SCI Pain Basic Data Set
CDEs	CRF Module or Guideline	Annotated Form
Coming Soon	American Spinal Injury Association	Coming Soon

International Standards for Neurological Classification of SCI

International Standards for Neurological Classification of SCI
CDEs	CRF Module or Guideline	Annotated Form
Coming Soon	Standard Neurological Classification of SCI	Coming Soon

International SCI Cardiovascular Function Basic Data Set

International SCI Cardiovascular Function Basic Data Set
CDEs	CRF Module or Guideline	Annotated Form
Coming Soon	American Spinal Injury Association	Coming Soon

International SCI Quality of Life Basic Data Set

International SCI Quality of Life Basic Data Set
CDEs	CRF Module or Guideline	Annotated Form
Coming Soon	American Spinal Injury Association	Coming Soon

Update History

No updates have been made at this time.

Acknowledgements

Please note that the institutions for all individuals acknowledged in this section were those they belonged to when the Working Group was initially formed.

SCI CDE Working Group

Fin Biering-Sørensen, MD, DMSc - Clinic for Spinal Cord Injuries, NeuroScience Centre, Rigshospitalet, and University of Copenhagen, Denmark
Susan Charlifue, PhD - Craig Hospital, Englewood, Colorado, USA
Michael DeVivo, DrPH - Department of Physical Medicine and Rehabilitation. University of Alabama at Birmingham, Birmingham, Alabama, USA
Stacie T. Grinnon, MS - KAI Research, Inc. (An Altarum Company), Rockville, Maryland, USA
Naomi Kleitman, PhD - National Institutes of Health/National Institute of Neurological Disorders and Stroke (NIH/NINDS), Bethesda, Maryland, USA
Yun Lu, PhD - KAI Research, Inc. (An Altarum Company), Rockville, Maryland, USA
Joanne Odenkirchen, MPH - National Institutes of Health/National Institute of Neurological Disorders and Stroke (NIH/NINDS), Bethesda, Maryland, USA

Feedback

The SCI CDE Working Group welcomes feedback about these data standards. We are in the process of designing a feedback form to allow users to submit feedback about the SCI CDEs on this Web site. While this form is being developed, please submit any comments/questions you may have about the SCI CDEs to NINDSCommonData@kai-research.com and the NINDS CDE Team will forward your feedback to the appropriate parties. In your email correspondence, please indicate in the subject line that your message relates to the SCI CDEs.

References

Publications related to the development of the International Spinal Cord Injury Data Sets

Biering-Sørensen F, Charlifue S, DeVivo M, Noonan V, Post M, Stripling T, Wing P. International Spinal Cord Injury Data Sets. Spinal Cord 2006 Sep;44(9):530-4.
DeVivo M, Biering-Sørensen F, Charlifue S, Noonan V, Post M, Stripling T, Wing P. International Spinal Cord Injury Core Data Set. Spinal Cord 2006 Sep;44(9):535-40.
Biering-Sørensen F, Craggs M, Kennelly M, Schick E, Wyndaele JJ. International Lower Urinary Tract Function Basic Spinal Cord Injury Data Set. Spinal Cord 2008 May;46(5):325-30.
Biering-Sørensen F, Craggs M, Kennelly M, Schick E, Wyndaele JJ. International urodynamic basic spinal cord injury data set. Spinal Cord 2008 Jul;46(7):513-6.
Biering-Sørensen F, Craggs M, Kennelly M, Schick E, Wyndaele J-J. International urinary tract imaging basic spinal cord injury data set. Spinal Cord 2009;47:379-83.
Krogh K, Perkash I, Stiens SA, Biering-Sørensen F. International bowel function basic spinal cord injury data set. Spinal Cord. 2009 Mar;47(3):230-4
Krogh K, Perkash I, Stiens SA, Biering-Sørensen F. International bowel function extended spinal cord injury data set. Spinal Cord. 2009 Mar;47(3):235-41.
Widerström-Noga E, Biering-Sørensen F, Bryce T, Cardenas DD, Finnerup NB, Jensen MP, Richards S, Siddall PJ. The International Spinal Cord Injury Pain Basic Data Set. Spinal Cord 2008;46:818-23.