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

Collaborators, Affiliations

Collaborators

Curing Coma Campaign, 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 Cediel, Sherry Chou, Giuseppe Citerio, Jan Claassen, Chad Condie, Katie Cosmas, Claire Creutzfeldt, Neha Dangayach, Michael DeGeorgia, Caroline Der-Nigoghossian, Masoom Desai, Michael Diringer, James Dullaway, Brian Edlow, Ari Ercole, Anna Estraneo, Guido Falcone, Salia Farrokh, Simona Ferioli, Davinia Fernandez-Espejo, 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, Flora Hammond, Daniel Hanley, Jed Hartings, Ahmed Hassan, Raimund Helbok, Claude Hemphill, H E 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-Mantilla, 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, Naomi Niznick, Filipa Noronha-Falcão, 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, Chethan Rao, Lindsay Rasmussen, Verena Rass, Michael Reznik, Risa Richardson, Cassia Righy Shinotsuka, 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 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, 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

Affiliations

¹ Department of Neurology, University of North Carolina in Chapel Hill, Chapel Hill, NC, USA. Varina_Boerwinke@med.unc.edu.
² Department of Child Health and Neurology, University of Arizona College of Medicine - Phoenix, Phoenix, AZ, USA.
³ Department of Neurology, University of North Carolina in Chapel Hill, Chapel Hill, NC, USA.
⁴ Divisions of Critical Care Medicine and Child Neurology and Developmental Neuroscience, Department of Pediatrics, Baylor College of Medicine, Houston, TX, USA.
⁵ Departments of Paediatrics and Clinical Neurological Sciences, Schulich School of Medicine and Dentistry, Western University, London, ON, Canada.
⁶ Brain Injury Association of America Family Advocate, Phoenix, AZ, USA.
⁷ Department of Paediatrics (Neurology), The Hospital for Sick Children, University of Toronto, Toronto, ON, Canada.
⁸ Department of Neurology, Boston Children's Hospital and Harvard Medical School, Boston, MA, USA.
⁹ Moberg Analytics, Inc., Philadelphia, PA, USA.
¹⁰ Discipline of Pediatrics, Children's Hospital of Michigan and Hutzel Women's Hospital, Central Michigan University, Mount Pleasant, MI, USA.
¹¹ School of Biomedical Engineering and Imaging Sciences, King's College London, London, UK.
¹² Department of Neuropsychology, Kennedy Krieger Institute, Baltimore, MD, USA.
¹³ Department of Psychiatry and Behavioral Sciences, Johns Hopkins University School of Medicine, Baltimore, MD, USA.

PMID: 38062304
DOI: 10.1007/s12028-023-01870-7

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

Varina L Boerwinkle et al. Neurocrit Care. 2024 Feb.

. 2024 Feb;40(1):65-73.

doi: 10.1007/s12028-023-01870-7. Epub 2023 Dec 7.

Authors

Collaborators

Curing Coma Campaign, 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 Cediel, Sherry Chou, Giuseppe Citerio, Jan Claassen, Chad Condie, Katie Cosmas, Claire Creutzfeldt, Neha Dangayach, Michael DeGeorgia, Caroline Der-Nigoghossian, Masoom Desai, Michael Diringer, James Dullaway, Brian Edlow, Ari Ercole, Anna Estraneo, Guido Falcone, Salia Farrokh, Simona Ferioli, Davinia Fernandez-Espejo, 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, Flora Hammond, Daniel Hanley, Jed Hartings, Ahmed Hassan, Raimund Helbok, Claude Hemphill, H E 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-Mantilla, 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, Naomi Niznick, Filipa Noronha-Falcão, 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, Chethan Rao, Lindsay Rasmussen, Verena Rass, Michael Reznik, Risa Richardson, Cassia Righy Shinotsuka, 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 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, 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

Affiliations

¹ Department of Neurology, University of North Carolina in Chapel Hill, Chapel Hill, NC, USA. Varina_Boerwinke@med.unc.edu.
² Department of Child Health and Neurology, University of Arizona College of Medicine - Phoenix, Phoenix, AZ, USA.
³ Department of Neurology, University of North Carolina in Chapel Hill, Chapel Hill, NC, USA.
⁴ Divisions of Critical Care Medicine and Child Neurology and Developmental Neuroscience, Department of Pediatrics, Baylor College of Medicine, Houston, TX, USA.
⁵ Departments of Paediatrics and Clinical Neurological Sciences, Schulich School of Medicine and Dentistry, Western University, London, ON, Canada.
⁶ Brain Injury Association of America Family Advocate, Phoenix, AZ, USA.
⁷ Department of Paediatrics (Neurology), The Hospital for Sick Children, University of Toronto, Toronto, ON, Canada.
⁸ Department of Neurology, Boston Children's Hospital and Harvard Medical School, Boston, MA, USA.
⁹ Moberg Analytics, Inc., Philadelphia, PA, USA.
¹⁰ Discipline of Pediatrics, Children's Hospital of Michigan and Hutzel Women's Hospital, Central Michigan University, Mount Pleasant, MI, USA.
¹¹ School of Biomedical Engineering and Imaging Sciences, King's College London, London, UK.
¹² Department of Neuropsychology, Kennedy Krieger Institute, Baltimore, MD, USA.
¹³ Department of Psychiatry and Behavioral Sciences, Johns Hopkins University School of Medicine, Baltimore, MD, USA.

PMID: 38062304
DOI: 10.1007/s12028-023-01870-7

Erratum in

Correction: Common Data Elements for Disorders of Consciousness: Recommendations from the Working Group in the Pediatric Population.
Boerwinkle VL, Appavu B, Cediel EG, Erklaurer J, Lalgudi Ganesan S, Gibbons C, Hahn C, LaRovere KL, Moberg D, Natarajan G, Molteni E, Reuther WR, Slomine BS; Curing Coma Campaign, its Contributing Members. Boerwinkle VL, et al. Neurocrit Care. 2025 Feb;42(1):315-316. doi: 10.1007/s12028-024-02095-y. Neurocrit Care. 2025. PMID: 39192103 No abstract available.

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.

Keywords: Coma; Common data elements; Consciousness; Disorder of consciousness; Neonatal; Pediatric; Standardization.

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References

1. Boerwinkle VL, Schor NF, Slomine BS, et al. Proceedings of the first pediatric coma and disorders of consciousness symposium by the curing coma campaign, pediatric neurocritical care research group, and NINDS: gearing for success in coma advancements for children and neonates. Neurocrit Care. 2023. https://doi.org/10.1007/s12028-023-01673-w . - DOI - PubMed - PMC
1. LaRovere KL, Tasker RC. Defining catastrophic brain injury in children leading to coma and disorders of consciousness and the scope of the problem. Curr Opin Pediatr. 2020;32(6):750–8. https://doi.org/10.1097/MOP.0000000000000951 . - DOI - PubMed
1. Adelson PD, Pineda J, Bell MJ, et al. Common data elements for pediatric traumatic brain injury: recommendations from the working group on demographics and clinical assessment. J Neurotrauma. 2012;29(4):639–53. https://doi.org/10.1089/neu.2011.1952 . - DOI - PubMed - PMC
1. Grinnon ST, Miller K, Marler JR, et al. National institute of neurological disorders and stroke common data element project - approach and methods. Clin Trials. 2012;9(3):322–9. https://doi.org/10.1177/1740774512438980 . - DOI - PubMed - PMC
1. Yakhkind A, Niznick N, Bodien Y, et al. Common data elements for disorders of consciousness: recommendations from the working group on behavioral phenotyping. Neurocrit Care. 2023. https://doi.org/10.1007/s12028-023-01844-9 . - DOI - PubMed

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

Collaborators

Affiliations

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

Authors

Collaborators

Affiliations

Erratum in

Abstract

References

MeSH terms

LinkOut - more resources

Full Text Sources

Miscellaneous