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. 2024 Jun;40(3):909-917.
doi: 10.1007/s12028-023-01844-9. Epub 2023 Sep 19.

Common Data Elements for Disorders of Consciousness: Recommendations from the Working Group on Behavioral Phenotyping

Aleksandra Yakhkind #  1 , Naomi Niznick #  2 , Yelena G Bodien  3   4 , Flora M Hammond  5 , Douglas Katz  6 , Jacques Luaute  7 , Molly McNett  8 , Lionel Naccache  9 , Katherine O'Brien  10 , Caroline Schnakers  11 , Tarek Sharshar  12 , Beth S Slomine  13   14 , Joseph T Giacino  15   16 ; Curing Coma Campaign and its Contributing Members
Collaborators, Affiliations

Common Data Elements for Disorders of Consciousness: Recommendations from the Working Group on Behavioral Phenotyping

Aleksandra Yakhkind et al. Neurocrit Care. 2024 Jun.

Erratum in

Abstract

Background: The recent publication of practice guidelines for management of patients with disorders of consciousness (DoC) in the United States and Europe was a major step forward in improving the accuracy and consistency of terminology, diagnostic criteria, and prognostication in this population. There remains a pressing need for a more precise brain injury classification system that combines clinical semiology with neuroimaging, electrophysiologic, and other biomarker data. To address this need, the National Institute of Neurological Disorders and Stroke launched the Common Data Elements (CDEs) initiative to facilitate systematic collection of high-quality research data in studies involving patients with neurological disease. The Neurocritical Care Society's Curing Coma Campaign expanded this effort in 2018 to develop CDEs for DoC. Herein, we present CDE recommendations for behavioral phenotyping of patients with DoC.

Methods: The Behavioral Phenotyping Workgroup used a preestablished, five-step process to identify and select candidate CDEs that included review of existing National Institute of Neurological Disorders and Stroke CDEs, nomination and systematic vetting of new CDEs, CDE classification, iterative review, and approval of panel recommendations and development of corresponding case review forms.

Results: We identified a slate of existing and newly proposed basic, supplemental, and exploratory CDEs that can be used for behavioral phenotyping of adult and pediatric patients with DoC.

Conclusions: The proposed behavioral phenotyping CDEs will assist with international harmonization of DoC studies and allow for more precise characterization of study cohorts, favorably impacting observational studies and clinical trials aimed at improving outcome in this population.

Keywords: Behavior; Coma; Common data elements; Consciousness; Phenotype.

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References

    1. Giacino JT, Katz DI, Schiff ND, et al. Comprehensive systematic review update summary: disorders of consciousness: report of the Guideline Development, Dissemination, and Implementation Subcommittee of the American Academy of Neurology; the American Congress of Rehabilitation Medicine; and the National Institute on Disability, Independent Living, and Rehabilitation Research. Neurology. 2018;91(10):461–70. - DOI - PubMed - PMC
    1. Giacino JT, Katz DI, Schiff ND, et al. Practice guideline update recommendations summary: disorders of consciousness: report of the Guideline Development, Dissemination, and Implementation Subcommittee of the American Academy of Neurology; the American Congress of Rehabilitation Medicine; and the National Institute on Disability, Independent Living, and Rehabilitation Research. Neurology. 2018;91(10):450–60. - DOI - PubMed - PMC
    1. Kondziella D, Bender A, Diserens K, et al. European Academy of Neurology guideline on the diagnosis of coma and other disorders of consciousness. Eur J Neurol. 2020;27(5):741–56. - DOI - PubMed
    1. Schnakers C, Vanhaudenhuyse A, Giacino J, et al. Diagnostic accuracy of the vegetative and minimally conscious state: clinical consensus versus standardized neurobehavioral assessment. BMC Neurol. 2009;9:35. - DOI - PubMed - PMC
    1. American Congress of Rehabilitation Medicine BI-ISIGDoCTF, Seel RT, Sherer M, et al. Assessment scales for disorders of consciousness: evidence-based recommendations for clinical practice and research. Arch Phys Med Rehabil. 2010;91(12):1795–813.

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