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Common Data Elements for Disorders of Consciousness: Recommendations from the Electrophysiology Working Group

  • Common Data Elements for Disorders of Consciousness
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Abstract

Background

Electroencephalography (EEG) has long been recognized as an important tool in the investigation of disorders of consciousness (DoC). From inspection of the raw EEG to the implementation of quantitative EEG, and more recently in the use of perturbed EEG, it is paramount to providing accurate diagnostic and prognostic information in the care of patients with DoC. However, a nomenclature for variables that establishes a convention for naming, defining, and structuring data for clinical research variables currently is lacking. As such, the Neurocritical Care Society’s Curing Coma Campaign convened nine working groups composed of experts in the field to construct common data elements (CDEs) to provide recommendations for DoC, with the main goal of facilitating data collection and standardization of reporting. This article summarizes the recommendations of the electrophysiology DoC working group.

Methods

After assessing previously published pertinent CDEs, we developed new CDEs and categorized them into “disease core,” “basic,” “supplemental,” and “exploratory.” Key EEG design elements, defined as concepts that pertained to a methodological parameter relevant to the acquisition, processing, or analysis of data, were also included but were not classified as CDEs.

Results

After identifying existing pertinent CDEs and developing novel CDEs for electrophysiology in DoC, variables were organized into a framework based on the two primary categories of resting state EEG and perturbed EEG. Using this categorical framework, two case report forms were generated by the working group.

Conclusions

Adherence to the recommendations outlined by the electrophysiology working group in the resting state EEG and perturbed EEG case report forms will facilitate data collection and sharing in DoC research on an international level. In turn, this will allow for more informed and reliable comparison of results across studies, facilitating further advancement in the realm of DoC research.

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Acknowledgements

The Curing Coma Campaign Collaborators are listed in the Supplementary Appendix.

Funding

Included National Institute of Neurological Disorders and Stroke (NINDS) (R01NS106014, R03NS112760, R21NS128326) and James S. McDonnell Foundation (J.C.); Institutional KL2 Career Development Award from the Miami Clinical and Translational Science Institute (CTSI), National Center for Advancing Translational Sciences (NCATS), UL1TR002736 and by the NINDS (K23NS126577, R21NS128326) (AA); United States Department of Defense (W81XWH19-1–0514), American Heart Association (19CDA34760291) and Innovators for Neuroscience in Kids Foundation (BA); NINDS (R01NS117904, UG3NS123307), Yale New Haven Health System (YNHHS), Innovations (EG); European Research Area (ERA), PerMed JTC2019 (project PerBrain) and JTC2021 (project ModelDXConsciousness) (JDS); Calgary Health Foundation Grant for Neurocritical Care Expansion Project, Office of Health & Medical Education Scholarship Grant, Canadian Institute of Health Research Grant (BR); European Union’s Horizon2020 Framework Program for Research and Innovation under the Specific Grant Agreement No.945539 (Human Brain Project SGA3) and by the Fondazione Regionale per la Ricerca Biomedica (Regione Lombardia), Project PerBrain, call ERAPERMED2019-101,GA779282 (MR).

Author information

Authors and Affiliations

  1. Department of Neurology, Columbia University Medical Center, 177 Fort Washington Avenue, MHB 8 Center, Room 300, New York, NY, 10032, USA

    Elizabeth E. Carroll & Jan Claassen

  2. NewYork-Presbyterian Hospital, New York, NY, USA

    Elizabeth E. Carroll, Caroline Der-Nigoghossian & Jan Claassen

  3. Department of Neurology, University of Miami, Miami, FL, USA

    Ayham Alkhachroum

  4. Barrow Neurological Institute at Phoenix Children’s Hospital, Phoenix, AZ, USA

    Brian Appavu

  5. University of Arizona College of Medicine – Phoenix, Phoenix, AZ, USA

    Brian Appavu

  6. Divisions of Neurocritical Care and Emergency Neurology and Epilepsy, Department of Neurology, Yale University School of Medicine, New Haven, CT, USA

    Emily Gilmore

  7. Yale New Haven Hospital, New Haven, CT, USA

    Emily Gilmore

  8. Departments of Critical Care Medicine and Clinical Neurosciences, University of Calgary, Calgary, AB, Canada

    Julie Kromm

  9. Hotchkiss Brain Institute, University of Calgary, Calgary, AB, Canada

    Julie Kromm

  10. Sorbonne Université, Institut du Cerveau - Paris Brain Institute - ICM, Inserm, Centre national de la recherche scientifique, Assistance Publique–Hôpitaux de Paris, Neurosciences, Hôpital de La Pitié Salpêtrière, Paris, France

    Benjamin Rohaut

  11. Department of Biomedical and Clinical Sciences, University of Milan, Milan, Italy

    Mario Rosanova

  12. Paris Brain Institute (ICM), Centre national de la recherche scientifique, Paris, France

    Jacobo Diego Sitt

Authors
  1. Elizabeth E. Carroll
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  2. Caroline Der-Nigoghossian
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  3. Ayham Alkhachroum
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  4. Brian Appavu
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  5. Emily Gilmore
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  6. Julie Kromm
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  7. Benjamin Rohaut
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  8. Mario Rosanova
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  9. Jacobo Diego Sitt
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  10. Jan Claassen
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Consortia

the Curing Coma Campaign and its Contributing Members

Contributions

EC and JC wrote the initial draft of the manuscript. CD, AA, BA, EG, JK, BR, MR, and JDS, edited the manuscript and approved the final content. All co-authors contributed equally to the case report forms released with the article.

Corresponding author

Correspondence to Jan Claassen.

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Conflict of interest

Minority shareholder in iCE Neurosystems (J.C.), Minority shareholder of Intrinsic Powers Inc., a spin-off of the University of Milan, Milan, Italy (MR). The remaining authors have no conflicts of interest.

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New data were not acquired or analyzed for this article, and therefore there was no need for informed consent or approval from an institutional review board.

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Carroll, E.E., Der-Nigoghossian, C., Alkhachroum, A. et al. Common Data Elements for Disorders of Consciousness: Recommendations from the Electrophysiology Working Group. Neurocrit Care 39, 578–585 (2023). https://doi.org/10.1007/s12028-023-01795-1

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  • DOI: https://doi.org/10.1007/s12028-023-01795-1

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