Journal article
Recommendations for the National Institute for Neurologic Disorders and Stroke spinal cord injury common data elements for children and youth with SCI.
- Mulcahey MJ Department of Occupational Therapy, Jefferson College of Health Professions, Thomas Jefferson University, Philadelphia, PA, USA.
- Vogel LC Shriners Hospitals for Children, Chicago, IL, USA.
- Sheikh M The Emmes Corporation, Rockville, MD, USA.
- Arango-Lasprilla JC BioCruces Health Research Institute, Cruces University Hospital, Basque Foundation for Science, Bizkaia, Spain.
- Augutis M Karolinska Institutet, Stockholm, Sweden.
- Garner E Austin Health, Melbourne, Victoria, Australia.
- Hagen EM Regional Hospital of Viborg, Viborg, Denmark.
- Jakeman LB NIH/NINDS Neuroscience Center, Bethesda, MD, USA.
- Kelly E Shriners Hospitals for Children, Chicago, IL, USA.
- Martin R Kennedy Krieger Institute, Baltimore, MD, USA.
- Odenkirchen J NIH/NINDS Neuroscience Center, Bethesda, MD, USA.
- Scheel-Sailer A Swiss Paraplegic Center, Nottwil, Switzerland.
- Schottler J Shriners Hospitals for Children, Chicago, IL, USA.
- Taylor H TIRR Memorial Hermann Rehabilitation and Research & University of Texas Health Science Center, Houston, TX, USA.
- Thielen CC Department of Occupational Therapy, Jefferson College of Health Professions, Thomas Jefferson University, Philadelphia, PA, USA.
- Zebracki K Shriners Hospitals for Children, Chicago, IL, USA.
- 2016-11-16
Published in:
- Spinal cord. - 2017
Adolescent
Child
Child, Preschool
Common Data Elements
Humans
Infant
Infant, Newborn
National Institute of Neurological Disorders and Stroke (U.S.)
Spinal Cord Injuries
United States
English
STUDY DESIGN
In 2014, the adult spinal cord injury (SCI) common data element (CDE) recommendations were made available. This project was a review of the adult SCI CDE for relevance to children and youth with SCI.
OBJECTIVES
The objective of this study was to review the National Institute of Neurologic Disorders and Stroke (NINDS) adult SCI CDEs for relevance to children and youth with SCI.
SETTING
International.
METHODS
The pediatric working group consisted of international members with varied fields of expertise related to pediatric SCI. The group convened biweekly meetings for 6 months in 2015. All of the adult SCI CDEs were reviewed, evaluated and modified/created for four age groups: 0-5 years, 6-12 years, 13-15 years and 16-18 years. Whenever possible, results of published research studies were used to guide recommendations. In the absence of empirical support, grey literature and international content expert consensus were garnered. Existing pediatric NINDS CDEs and new CDEs were developed in areas where adult recommendations were not appropriate. After internal working group review of domain recommendations, these pediatric CDEs were vetted during a public review from November through December 2015.
RESULTS
Version 1.0 of the pediatric SCI CDEs was posted in February 2016.
CONCLUSION
The pediatric SCI CDEs are incorporated directly into the NINDS SCI CDE sets and can be found at https://commondataelements.ninds.nih.gov.
In 2014, the adult spinal cord injury (SCI) common data element (CDE) recommendations were made available. This project was a review of the adult SCI CDE for relevance to children and youth with SCI.
OBJECTIVES
The objective of this study was to review the National Institute of Neurologic Disorders and Stroke (NINDS) adult SCI CDEs for relevance to children and youth with SCI.
SETTING
International.
METHODS
The pediatric working group consisted of international members with varied fields of expertise related to pediatric SCI. The group convened biweekly meetings for 6 months in 2015. All of the adult SCI CDEs were reviewed, evaluated and modified/created for four age groups: 0-5 years, 6-12 years, 13-15 years and 16-18 years. Whenever possible, results of published research studies were used to guide recommendations. In the absence of empirical support, grey literature and international content expert consensus were garnered. Existing pediatric NINDS CDEs and new CDEs were developed in areas where adult recommendations were not appropriate. After internal working group review of domain recommendations, these pediatric CDEs were vetted during a public review from November through December 2015.
RESULTS
Version 1.0 of the pediatric SCI CDEs was posted in February 2016.
CONCLUSION
The pediatric SCI CDEs are incorporated directly into the NINDS SCI CDE sets and can be found at https://commondataelements.ninds.nih.gov.
- Language
-
- English
- Open access status
- closed
- Identifiers
-
- DOI 10.1038/sc.2016.139
- PMID 27845358
- Persistent URL
- https://sonar.ch/global/documents/278811
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