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

TY - JOUR

T1 - Common Data Elements for Disorders of Consciousness

T2 - Recommendations from the Working Group in the Pediatric Population

AU - the Curing Coma Campaign, its Contributing Members

AU - Boerwinkle, Varina L.

AU - Appavu, Brian

AU - Cediel, Emilio Garzon

AU - Erklaurer, Jennifer

AU - Lalgudi Ganesan, Saptharishi

AU - Gibbons, Christie

AU - Hahn, Cecil

AU - LaRovere, Kerri L.

AU - Moberg, Dick

AU - Natarajan, Girija

AU - Molteni, Erika

AU - Reuther, William R.

AU - Slomine, Beth S.

N1 - Funding Information: No funding directly supported this work. Publisher Copyright: © Springer Science+Business Media, LLC, part of Springer Nature and Neurocritical Care Society 2023.

PY - 2024/2/29

Y1 - 2024/2/29

N2 - 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.

AB - 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.

KW - Coma

KW - Common data elements

KW - Consciousness

KW - Disorder of consciousness

KW - Neonatal

KW - Pediatric

KW - Standardization

UR - https://www.scopus.com/pages/publications/85178963223

U2 - 10.1007/s12028-023-01870-7

DO - 10.1007/s12028-023-01870-7

M3 - Article

C2 - 38062304

AN - SCOPUS:85178963223

SN - 1541-6933

VL - 40

SP - 65

EP - 73

JO - NEUROCRITICAL CARE

JF - NEUROCRITICAL CARE

IS - 1

ER -