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

the 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

the Curing Coma Campaign, its Contributing Members

Biomedical Engineering Department

Research output: Contribution to journal › Article › peer-review

3 Citations (Scopus)

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.

Original language	English
Pages (from-to)	65-73
Number of pages	9
Journal	NEUROCRITICAL CARE
Volume	40
Issue number	1
DOIs	https://doi.org/10.1007/s12028-023-01870-7
Publication status	Published - Feb 2024

Keywords

Coma
Common data elements
Consciousness
Disorder of consciousness
Neonatal
Pediatric
Standardization

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10.1007/s12028-023-01870-7

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@article{a74a1bb48deb44efafa5fb9aec89b5b9,

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

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{\textquoteright}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{\textquoteright} 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",

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

note = "Funding Information: No funding directly supported this work. Publisher Copyright: {\textcopyright} Springer Science+Business Media, LLC, part of Springer Nature and Neurocritical Care Society 2023.",

year = "2024",

month = feb,

doi = "10.1007/s12028-023-01870-7",

language = "English",

volume = "40",

pages = "65--73",

journal = "NEUROCRITICAL CARE",

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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

Y1 - 2024/2

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.

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KW - Common data elements

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KW - Disorder of consciousness

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KW - Standardization

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ER -

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

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Keywords

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