Collection

Common Data Elements for Disorders of Consciousness

Submission status
Open
Open for submission from
13 June 2023
Submission deadline
Ongoing
In 2020, the Neurocritical Care Society’s Curing Coma Campaign launched an international initiative to create common data elements (CDEs) for disorders of consciousness (DoC). This CDE initiative is motivated by the recognition that ongoing progress in our field depends on the development of harmonized and uniform data elements. We formed multidisciplinary Work Groups with expertise in (1) Behavioral Phenotyping; (2) Hospital Course/Confounders/Medications; (3) Neuroimaging; (4) Electrophysiology; (5) Biospecimens; (6) Physiologic Data/Big Data; (7) Therapeutic Interventions; (8) Outcomes/Endpoints; and (9) Goals of Care/Family Data. Here, we disseminate the initial recommendations of this CDE development process, along with links to case report forms (CRFs) with CDEs that can be used in DoC studies. We aim for these CDEs to support progress in the field of DoC research and to facilitate multi-institutional collaboration.

Editors

  • Brian L. Edlow Brian L. Edlow , 

    Brian L. Edlow

    Dr. Edlow is an associate professor of neurology at Harvard Medical School and a critical care neurologist at Massachusetts General Hospital, where he directs the Laboratory for NeuroImaging of Coma and Consciousness and is associate director of the Center for Neurotechnology and Neurorecovery.

  • Jan Claassen Jan Claassen  &

    Jan Claassen

    Dr. Claassen is a professor of neurology at Columbia University and a critical care neurologist at New York–Presbyterian Hospital at Columbia University, where he is chief of critical care and hospitalist neurology and head of the disorders of consciousness laboratory.

  • Jose I. Suarez Jose I. Suarez

    Jose I. Suarez

    Dr. Suarez is a professor of neurology, neurosurgery, and anesthesiology and critical care medicine, and director of the Neurocritical Care Division at Johns Hopkins University. He is a past president of the Neurocritical Care Society and the Founding and Past Chair of the Neurocritical Care Research Network.

Articles (9 in this collection)