Common Data Elements for Disorders of Consciousness: Recommendations from the Working Group in the Pediatric Population

Varina L Boerwinkle; Brian Appavu; Emilio Garzon Cediel; Jennifer Erklaurer; Saptharishi Lalgudi Ganesan; Christie Gibbons; Cecil Hahn; Kerri L LaRovere; Dick Moberg; Girija Natarajan; Erika Molteni; William R Reuther; Beth S Slomine; Curing Coma Campaign, its Contributing Members

doi:10.1007/s12028-023-01870-7

Common Data Elements for Disorders of Consciousness: Recommendations from the Working Group in the Pediatric Population

Neurocrit Care. 2024 Feb;40(1):65-73. doi: 10.1007/s12028-023-01870-7. Epub 2023 Dec 7.

Authors

Affiliations

¹ Department of Neurology, University of North Carolina in Chapel Hill, Chapel Hill, NC, USA. Varina_Boerwinkle@med.unc.edu.
² Department of Child Health and Neurology, University of Arizona College of Medicine - Phoenix, Phoenix, AZ, USA.
³ Department of Neurology, University of North Carolina in Chapel Hill, Chapel Hill, NC, USA.
⁴ Divisions of Critical Care Medicine and Child Neurology and Developmental Neuroscience, Department of Pediatrics, Baylor College of Medicine, Houston, TX, USA.
⁵ Departments of Paediatrics and Clinical Neurological Sciences, Schulich School of Medicine and Dentistry, Western University, London, ON, Canada.
⁶ Brain Injury Association of America Family Advocate, Phoenix, AZ, USA.
⁷ Department of Paediatrics (Neurology), The Hospital for Sick Children, University of Toronto, Toronto, ON, Canada.
⁸ Department of Neurology, Boston Children's Hospital and Harvard Medical School, Boston, MA, USA.
⁹ Moberg Analytics, Inc., Philadelphia, PA, USA.
¹⁰ Discipline of Pediatrics, Children's Hospital of Michigan and Hutzel Women's Hospital, Central Michigan University, Mount Pleasant, MI, USA.
¹¹ School of Biomedical Engineering and Imaging Sciences, King's College London, London, UK.
¹² Department of Neuropsychology, Kennedy Krieger Institute, Baltimore, MD, USA.
¹³ Department of Psychiatry and Behavioral Sciences, Johns Hopkins University School of Medicine, Baltimore, MD, USA.

PMID: 38062304
DOI: 10.1007/s12028-023-01870-7

Abstract

Background: The fundamental gap obstructing forward progress of evidenced-based care in pediatric and neonatal disorders of consciousness (DoC) is the lack of defining consensus-based terminology to perform comparative research. This lack of shared nomenclature in pediatric DoC stems from the inherently recursive dilemma of the inability to reliably measure consciousness in the very young. However, recent advancements in validated clinical examinations and technologically sophisticated biomarkers of brain activity linked to future abilities are unlocking this previously formidable challenge to understanding the DoC in the developing brain.

Methods: To address this need, the first of its kind international convergence of an interdisciplinary team of pediatric DoC experts was organized by the Neurocritical Care Society's Curing Coma Campaign. The multidisciplinary panel of pediatric DoC experts proposed pediatric-tailored common data elements (CDEs) covering each of the CDE working groups including behavioral phenotyping, biospecimens, electrophysiology, family and goals of care, neuroimaging, outcome and endpoints, physiology and big Data, therapies, and pediatrics.

Results: We report the working groups' pediatric-focused DoC CDE recommendations and disseminate CDEs to be used in studies of pediatric patients with DoC.

Conclusions: The CDEs recommended support the vision of progressing collaborative and successful internationally collaborative pediatric coma research.

Keywords: Coma; Common data elements; Consciousness; Disorder of consciousness; Neonatal; Pediatric; Standardization.

MeSH terms

Biomedical Research*
Child
Coma / diagnosis
Coma / therapy
Common Data Elements*
Consciousness
Consciousness Disorders / diagnosis
Consciousness Disorders / therapy
Humans
Infant, Newborn