TY - JOUR
T1 - Common Data Elements for Disorders of Consciousness
T2 - Recommendations from the Working Group on Behavioral Phenotyping
AU - the Curing Coma Campaign and its Contributing Members
AU - Yakhkind, Aleksandra
AU - Niznick, Naomi
AU - Bodien, Yelena G.
AU - Hammond, Flora M.
AU - Katz, Douglas
AU - Luaute, Jacques
AU - McNett, Molly
AU - Naccache, Lionel
AU - O’Brien, Katherine
AU - Schnakers, Caroline
AU - Sharshar, Tarek
AU - Slomine, Beth S.
AU - Giacino, Joseph T.
AU - Zink, Elizabeth
AU - Zimmerman, Lara
AU - Ziai, Wendy
AU - Zhang, Bei
AU - Zammit, Chris
AU - Zahuranec, Darin
AU - Zafonte, Ross
AU - Yakhind, Aleksandra
AU - Witherspoon, Briana
AU - Whyte, John
AU - Wainwright, Mark
AU - Wagner, Amy
AU - Vox, Ford
AU - Voss, Henning
AU - Videtta, Walter
AU - Vespa, Paul
AU - Venkatasubba, Chethan
AU - Varelas, Panos
AU - Udy, Andrew
AU - Turgeon, Alexis
AU - Trevick, Stephen
AU - Torbey, Michel
AU - Toker, Daniel
AU - Tinti, Lorenzo
AU - Threlkeld, Zachary
AU - Thibaut, Aurore
AU - Taran, Shaurya
AU - Sussman, Bethany
AU - Suarez, Jose
AU - Stevens, Robert
AU - Steinberg, Alexis
AU - Stamatakis, Emmanuel
AU - Smith, Wade
AU - Muehlschlegel, Susanne
AU - Ling, Geoffrey
AU - Hanley, Daniel F.
AU - Farrokh, Salia
N1 - Publisher Copyright:
© Springer Science+Business Media, LLC, part of Springer Nature and Neurocritical Care Society 2023. corrected publication 2023.
PY - 2024/6
Y1 - 2024/6
N2 - 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.
AB - 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.
KW - Behavior
KW - Coma
KW - Common data elements
KW - Consciousness
KW - Phenotype
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U2 - 10.1007/s12028-023-01844-9
DO - 10.1007/s12028-023-01844-9
M3 - Article
C2 - 37726548
AN - SCOPUS:85171430386
SN - 1541-6933
VL - 40
SP - 909
EP - 917
JO - Neurocritical care
JF - Neurocritical care
IS - 3
ER -