title: Recommendations for the National Institute for Neurologic Disorders and Stroke spinal cord injury common data elements for children and youth with SCI.
abstract: METHODS
  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.
  
  
  OBJECTIVE
  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.
  
  
  METHODS
  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.
  
  
  CONCLUSIONS
  The pediatric SCI CDEs are incorporated directly into the NINDS SCI CDE sets and can be found at https://commondataelements.ninds.nih.gov.
authors.affiliation: Department of Occupational Therapy, Jefferson College of Health Professions, Thomas Jefferson University, Philadelphia, PA, USA.
authors.forename: M J
authors.initials: MJ
authors.lastname: Mulcahey
authors.affiliation: Shriners Hospitals for Children, Chicago, IL, USA.
authors.forename: L C
authors.initials: LC
authors.lastname: Vogel
authors.affiliation: The Emmes Corporation, Rockville, MD, USA.
authors.forename: M
authors.initials: M
authors.lastname: Sheikh
authors.affiliation: BioCruces Health Research Institute, Cruces University Hospital, Basque Foundation for Science, Bizkaia, Spain.
authors.forename: J C
authors.initials: JC
authors.lastname: Arango-Lasprilla
authors.affiliation: Karolinska Institutet, Stockholm, Sweden.
authors.forename: M
authors.initials: M
authors.lastname: Augutis
authors.affiliation: Austin Health, Melbourne, Victoria, Australia.
authors.forename: E
authors.initials: E
authors.lastname: Garner
authors.affiliation: Regional Hospital of Viborg, Viborg, Denmark.
authors.forename: E M
authors.initials: EM
authors.lastname: Hagen
authors.affiliation: NIH/NINDS Neuroscience Center, Bethesda, MD, USA.
authors.forename: L B
authors.initials: LB
authors.lastname: Jakeman
authors.affiliation: Shriners Hospitals for Children, Chicago, IL, USA.
authors.forename: E
authors.initials: E
authors.lastname: Kelly
authors.affiliation: Kennedy Krieger Institute, Baltimore, MD, USA.
authors.forename: R
authors.initials: R
authors.lastname: Martin
authors.affiliation: NIH/NINDS Neuroscience Center, Bethesda, MD, USA.
authors.forename: J
authors.initials: J
authors.lastname: Odenkirchen
authors.affiliation: Swiss Paraplegic Center, Nottwil, Switzerland.
authors.forename: A
authors.initials: A
authors.lastname: Scheel-Sailer
authors.affiliation: Shriners Hospitals for Children, Chicago, IL, USA.
authors.forename: J
authors.initials: J
authors.lastname: Schottler
authors.affiliation: TIRR Memorial Hermann Rehabilitation and Research & University of Texas Health Science Center, Houston, TX, USA.
authors.forename: H
authors.initials: H
authors.lastname: Taylor
authors.affiliation: Department of Occupational Therapy, Jefferson College of Health Professions, Thomas Jefferson University, Philadelphia, PA, USA.
authors.forename: C C
authors.initials: CC
authors.lastname: Thielen
authors.affiliation: Shriners Hospitals for Children, Chicago, IL, USA.
authors.forename: K
authors.initials: K
authors.lastname: Zebracki
mesh_terms: D000293:Adolescent; D002648:Child; D002675:Child, Preschool; D065709:Common Data Elements; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D055825:National Institute of Neurological Disorders and Stroke (U.S.); D013119:Spinal Cord Injuries / Q000175:diagnosis / Q000453:epidemiology / Q000628:therapy; D014481:United States