TY - JOUR
T1 - Common Data Elements for Disorders of Consciousness
T2 - Recommendations from the Working Group on Hospital Course, Confounders, and Medications
AU - Curing Coma Campaign, its contributing members
AU - Barra, Megan E.
AU - Zink, Elizabeth K.
AU - Bleck, Thomas P.
AU - Cáceres, Eder
AU - Farrokh, Salia
AU - Foreman, Brandon
AU - Cediel, Emilio Garzón
AU - Hemphill, J. Claude
AU - Nagayama, Masao
AU - Olson, Dai Wai M.
AU - Suarez, Jose I.
AU - Aiyagari, Venkatesh
AU - Akbari, Yama
AU - Al-Mufti, Fawaz
AU - Alexander, Sheila
AU - Alexandrov, Anne
AU - Alkhachroum, Ayham
AU - Amiri, Moshagan
AU - Appavu, Brian
AU - Gebre, Meron Awraris
AU - Bader, Mary Kay
AU - Badjiata, Neeraj
AU - Balu, Ram
AU - Beekman, Rachel
AU - Beghi, Ettore
AU - Bell, Kathleen
AU - Beqiri, Erta
AU - Berlin, Tracey
AU - Bodien, Yelena
AU - Boerwinkle, Varina
AU - Boly, Melanie
AU - Bonnel, Alexandra
AU - Brown, Emery
AU - Carroll, Elizabeth
AU - Chou, Sherry
AU - Citerio, Giuseppe
AU - Classen, Jan
AU - Condie, Chad
AU - Cosmas, Katie
AU - Creutzfeldt, Claire
AU - Dangayach, Neha
AU - DeGeorgia, Michael
AU - Der-Nigoghoss, Caroline
AU - Desai, Masoom
AU - Diringer, Michael
AU - Dullaway, James
AU - Edlow, Brian
AU - Ercole, Ari
AU - Estraneo, Anna
AU - Fins, Joseph
N1 - Publisher Copyright:
© 2023, Springer Science+Business Media, LLC, part of Springer Nature and Neurocritical Care Society.
PY - 2023/12
Y1 - 2023/12
N2 - 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.
AB - 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.
KW - Clinical studies
KW - Coma
KW - Common data elements
KW - Consciousness
KW - Standardization
UR - http://www.scopus.com/inward/record.url?scp=85168703144&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85168703144&partnerID=8YFLogxK
U2 - 10.1007/s12028-023-01803-4
DO - 10.1007/s12028-023-01803-4
M3 - Article
C2 - 37610641
AN - SCOPUS:85168703144
SN - 1541-6933
VL - 39
SP - 586
EP - 592
JO - Neurocritical Care
JF - Neurocritical Care
IS - 3
ER -