• 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, and Curing Coma Campaign, its Contributing Members.
• Department of Neurology, University of North Carolina in Chapel Hill, Chapel Hill, NC, USA. Varina_Boerwinke@med.unc.edu.
• Neurocrit Care. 2024 Feb 1; 40 (1): 657365-73.

BackgroundThe 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.MethodsTo 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.ResultsWe report the working groups' pediatric-focused DoC CDE recommendations and disseminate CDEs to be used in studies of pediatric patients with DoC.ConclusionsThe CDEs recommended support the vision of progressing collaborative and successful internationally collaborative pediatric coma research.© 2023. Springer Science+Business Media, LLC, part of Springer Nature and Neurocritical Care Society.

19 keywords...

hide…