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

  • Common Data Elements for Disorders of Consciousness:
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A Correction to this article was published on 04 October 2023

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Abstract

Background

Over the past 5 decades, advances in neuroimaging have yielded insights into the pathophysiologic mechanisms that cause disorders of consciousness (DoC) in patients with severe brain injuries. Structural, functional, metabolic, and perfusion imaging studies have revealed specific neuroanatomic regions, such as the brainstem tegmentum, thalamus, posterior cingulate cortex, medial prefrontal cortex, and occipital cortex, where lesions correlate with the current or future state of consciousness. Advanced imaging modalities, such as diffusion tensor imaging, resting-state functional magnetic resonance imaging (fMRI), and task-based fMRI, have been used to improve the accuracy of diagnosis and long-term prognosis, culminating in the endorsement of fMRI for the clinical evaluation of patients with DoC in the 2018 US (task-based fMRI) and 2020 European (task-based and resting-state fMRI) guidelines. As diverse neuroimaging techniques are increasingly used for patients with DoC in research and clinical settings, the need for a standardized approach to reporting results is clear. The success of future multicenter collaborations and international trials fundamentally depends on the implementation of a shared nomenclature and infrastructure.

Methods

To address this need, the Neurocritical Care Society’s Curing Coma Campaign convened an international panel of DoC neuroimaging experts to propose common data elements (CDEs) for data collection and reporting in this field.

Results

We report the recommendations of this CDE development panel and disseminate CDEs to be used in neuroimaging studies of patients with DoC.

Conclusions

These CDEs will support progress in the field of DoC neuroimaging and facilitate international collaboration.

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Acknowledgements

The Curing Coma Campaign Collaborators are listed in the Supplementary Appendix. Venkatesh Aiyagari, Yama Akbari, Fawaz Al-Mufti, Sheila Alexander, Anne Alexandrov, Ayham Alkhachroum, Moshagan Amiri, Brian Appavu, Meron Awraris Gebre, Mary Kay Bader, Neeraj Badjiata, Ram Balu, Megan Barra, Rachel Beekman, Ettore Beghi, Kathleen Bell, Erta Beqiri, Tracey Berlin, Thomas Bleck, Yelena Bodien, Varina Boerwinkle, Melanie Boly, Alexandra Bonnel, Emery Brown, Eder Caceres, Elizabeth Carroll, Emilio G. Cediel, Sherry Chou, Giuseppe Citerio, Jan Classen, Chad Condie, Katie Cosmas, Claire Creutzfeldt, Neha Dangayach, Michael DeGeorgia, Caroline Der-Nigoghoss, Masoom Desai, Michael Diringer, James Dullaway, Brian Edlow, Ari Ercole, Anna Estraneo, Guido Falcone, Salia Farrokh, Simona Ferioli, Davinia Fernandez-Esp, Ericka Fink, Joseph Fins, Brandon Foreman, Jennifer Frontera, Rishi Ganesan, Ahmeneh Ghavam, Joseph Giacino, Christie Gibbons, Emily Gilmore, Olivia Gosseries, Theresa Green, David Greer, Mary Guanci, Cecil Hahn, Ryan Hakimi, Daniel F Hanley, Jed Hartings, Ahmed Hassan, Claude Hemphill, Holly Hinson, Karen Hirsch, Sarah Hocker, Peter Hu, Xiao Hu, Theresa Human, David Hwang, Judy Illes, Matthew Jaffa, Michael L. James, Anna Janas, Morgan Jones, Emanuela Keller, Maggie Keogh, Jenn Kim, Keri Kim, Hannah Kirsch, Matt Kirschen, Nerissa Ko, Daniel Kondziella, Natalie Kreitzer, Julie Kromm, Abhay Kumar, Pedro Kurtz, Steven Laureys, Thomas Lawson, Nicolas Lejeune, Ariane Lewis, John Liang, Geoffrey Ling, Sarah Livesay, Andrea Luppi, Lori Madden, Craig Maddux, Dea Mahanes, Shraddha Mainali, Nelson Maldonado, Rennan Martins Ribeiro, Marcello Massimini, Stephan Mayer, Victoria McCredie, Molly McNett, Jorge Mejia-Mantill, David Menon, Geert Meyfroidt, Julio Mijangos, Dick Moberg, Asma Moheet, Erika Molteni, Martin Monti, Chris Morrison, Susanne Muehlschlegel, Brooke Murtaugh, Lionel Naccache, Masao Nagayama, Emerson Nairon, Girija Natarajan, Virginia Newcombe, Niklas Nielsen, Filipa Noronha-Falc‹, Paul Nyquist, DaiWai Olson, Marwan Othman, Adrian Owen, Llewellyn Padayachy, Soojin Park, Melissa Pergakis, Len Polizzotto, Nader Pouratian, Marilyn Price Spivack, Lara Prisco, Javier Provencio, Louis Puybasset, Lindsay Rasmussen, Verena Rass, Risa Richardson, Cassia Righy Shinots, Chiara Robba, Courtney Robertson, Benjamin Rohaut, John Rolston, Mario Rosanova, Eric Rosenthal, Mary Beth Russell, Gisele Sampaio Silva, Leandro Sanz, Simone Sarasso, Aarti Sarwal, Nicolas Schiff, Caroline Schnakers, David Seder, Vishank Ar Shah, Amy Shapiro-Rosen, Angela Shapshak, Kartavya Sharma, Tarek Sharshar, Lori Shutter, Jacobo Sitt, Beth Slomine, Peter Smielewski, Wade Smith, Emmanuel Stamatakis, Alexis Steinberg, Robert Stevens, Jose Suarez, Bethany Sussman, Shaurya Taran, Aurore Thibaut, Zachary Threlkeld, Lorenzo Tinti, Daniel Toker, Michel Torbey, Stephen Trevick, Alexis Turgeon, Andrew Udy, Panos Varelas, Chethan Venkatasubba, Paul Vespa, Walter Videtta, Henning Voss, Ford Vox, Amy Wagner, Mark Wainwright, John Whyte, Briana Witherspoon, Aleksandra Yakhind, Ross Zafonte, Darin Zahuranec, Chris Zammit, Bei Zhang, Wendy Ziai, Lara Zimmerman, Elizabeth Zink

Funding

This work was supported by the National Institutes of Health Director’s Office (DP2HD101400), the National Institutes of Health National Institute of Neurological Disorders and Stroke (R21NS113037), the James S. McDonnell Foundation, and the European Union’s Horizon 2020 Framework Programme for Research and Innovation under the specific grant agreement No. 945539 (Human Brain Project SGA3).

Author information

Author notes

  1. Brian L. Edlow and Varina L. Boerwinkle: Co-first authors.

  2. Virginia F.J. Newcombe and Davinia Fernandez-Espejo: Co-senior authors.

Authors and Affiliations

  1. Center for Neurotechnology and Neurorecovery, Department of Neurology, Massachusetts General Hospital and Harvard Medical School, Boston, MA, USA

    Brian L. Edlow

  2. Athinoula A. Martinos Center for Biomedical Imaging, Massachusetts General Hospital, Charlestown, MA, USA

    Brian L. Edlow

  3. Clinical Resting-State Functional Magnetic Resonance Imaging Laboratory and Service, Department of Neurology, University of North Carolina School of Medicine, Chapel Hill, NC, USA

    Varina L. Boerwinkle

  4. Coma Science Group, GIGA Consciousness, University of Liège, Liège, Belgium

    Jitka Annen, Olivia Gosseries & Steven Laureys

  5. Centre de Cerveau2, University Hospital of Liège, Liège, Belgium

    Jitka Annen, Olivia Gosseries & Steven Laureys

  6. Department of Neurology, University of Wisconsin, Madison, WI, USA

    Melanie Boly

  7. Department of Psychiatry, Wisconsin Institute for Sleep and Consciousness, University of Wisconsin, Madison, WI, USA

    Melanie Boly

  8. Department of Radiology and Biomedical Imaging, University of California, San Francisco, San Francisco, CA, USA

    Pratik Mukherjee

  9. Department of Anesthesiology and Intensive Care, Groupe Hospitalier Pitié-Salpêtrière, Assistance Publique-Hôpitaux de Paris, Paris, France

    Louis Puybasset

  10. Departments of Anesthesiology and Critical Care Medicine, Neurology, Radiology, and Biomedical Engineering, Johns Hopkins University School of Medicine, Baltimore, MD, USA

    Robert D. Stevens

  11. Department of Neurology, Stanford University School of Medicine, Stanford, CA, USA

    Zachary D. Threlkeld

  12. PACE Section, Department of Medicine, University of Cambridge, Cambridge, UK

    Virginia F. J. Newcombe

  13. School of Psychology and Centre for Human Brain Health, University of Birmingham, Birmingham, UK

    Davinia Fernandez-Espejo

  14. CERVO Research Institute, Laval University, Quebec, Canada

    Steven Laureys

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  1. Brian L. Edlow
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Consortia

and the Curing Coma Campaign and its Contributing Members

  • Venkatesh Aiyagari
  • , Yama Akbari
  • , Fawaz Al-Mufti
  • , Sheila Alexander
  • , Anne Alexandrov
  • , Ayham Alkhachroum
  • , Moshagan Amiri
  • , Brian Appavu
  • , Meron Awraris Gebre
  • , Mary Kay Bader
  • , Neeraj Badjiata
  • , Ram Balu
  • , Megan Barra
  • , Rachel Beekman
  • , Ettore Beghi
  • , Kathleen Bell
  • , Erta Beqiri
  • , Tracey Berlin
  • , Thomas Bleck
  • , Yelena Bodien
  • , Varina Boerwinkle
  • , Melanie Boly
  • , Alexandra Bonnel
  • , Emery Brown
  • , Eder Caceres
  • , Elizabeth Carroll
  • , Emilio G. Cediel
  • , Sherry Chou
  • , Giuseppe Citerio
  • , Jan Classen
  • , Chad Condie
  • , Katie Cosmas
  • , Claire Creutzfeldt
  • , Neha Dangayach
  • , Michael DeGeorgia
  • , Caroline Der-Nigoghoss
  • , Masoom Desai
  • , Michael Diringer
  • , James Dullaway
  • , Brian Edlow
  • , Ari Ercole
  • , Anna Estraneo
  • , Guido Falcone
  • , Salia Farrokh
  • , Simona Ferioli
  • , Davinia Fernandez-Esp
  • , Ericka Fink
  • , Joseph Fins
  • , Brandon Foreman
  • , Jennifer Frontera
  • , Rishi Ganesan
  • , Ahmeneh Ghavam
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Contributions

BLE, VLB, VFJN, and DF-E wrote the initial draft of the manuscript. All coauthors edited the manuscript and approved the final content. All coauthors contributed equally to the case report forms released with the manuscript.

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Correspondence to Brian L. Edlow.

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Edlow, B.L., Boerwinkle, V.L., Annen, J. et al. Common Data Elements for Disorders of Consciousness: Recommendations from the Working Group on Neuroimaging. Neurocrit Care 39, 611–617 (2023). https://doi.org/10.1007/s12028-023-01794-2

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