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07.12.2023 | Common Data Elements for Disorders of Consciousness

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

verfasst von: 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, the Curing Coma Campaign, its Contributing Members

Erschienen in: Neurocritical Care | Ausgabe 1/2024

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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.

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Titel: Common Data Elements for Disorders of Consciousness: Recommendations from the Working Group in the Pediatric Population
verfasst von: 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
the Curing Coma Campaign, its Contributing Members
Publikationsdatum: 07.12.2023
Verlag: Springer US
Erschienen in: Neurocritical Care / Ausgabe 1/2024
Print ISSN: 1541-6933
Elektronische ISSN: 1556-0961
DOI: https://doi.org/10.1007/s12028-023-01870-7

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Abstract

Background

Methods

Results

Conclusions

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