Common Data Elements for Disorders of Consciousness - Version 1.0

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 and version 1.0 of the 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. 

We welcome feedback and are committed to revising the CDEs and CRFs to ensure that they reflect developments in our field. To provide feedback about the current CDEs and CRFs, and to make recommendations about updates for future versions, please email cde.curingcoma@gmail.com.