Abstract
The convergence of an interdisciplinary team of neurocritical care specialists to organize the Curing Coma Campaign is the first effort of its kind to coordinate national and international research efforts aimed at a deeper understanding of disorders of consciousness (DoC). This process of understanding includes translational research from bench to bedside, descriptions of systems of care delivery, diagnosis, treatment, rehabilitation, and ethical frameworks. The description and measurement of varying confounding factors related to hospital care was thought to be critical in furthering meaningful research in patients with DoC. Interdisciplinary hospital care is inherently varied across geographical areas as well as community and academic medical centers. Access to monitoring technologies, specialist consultation (medical, nursing, pharmacy, respiratory, and rehabilitation), staffing resources, specialty intensive and acute care units, specialty medications and specific surgical, diagnostic and interventional procedures, and imaging is variable, and the impact on patient outcome in terms of DoC is largely unknown. The heterogeneity of causes in DoC is the source of some expected variability in care and treatment of patients, which necessitated the development of a common nomenclature and set of data elements for meaningful measurement across studies. Guideline adherence in hemorrhagic stroke and severe traumatic brain injury may also be variable due to moderate or low levels of evidence for many recommendations. This article outlines the process of the development of common data elements for hospital course, confounders, and medications to streamline definitions and variables to collect for clinical studies of DoC.
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Acknowledgements
The Curing Coma Campaign Collaborators are listed in the supplementary Appendix. 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, 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, 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, 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, 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.
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MEB, EKZ, and JIS wrote the initial draft of the manuscript. All co-authors edited the manuscript and approved the final content. All co-authors contributed equally to the case report forms released with the article. All authors approved the final manuscript.
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Barra, M.E., Zink, E.K., Bleck, T.P. et al. Common Data Elements for Disorders of Consciousness: Recommendations from the Working Group on Hospital Course, Confounders, and Medications. Neurocrit Care 39, 586–592 (2023). https://doi.org/10.1007/s12028-023-01803-4
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DOI: https://doi.org/10.1007/s12028-023-01803-4