Rationale and Design of the Prospective German Registry of Outcome in Patients With Severe Disorders of Consciousness After Acute Brain Injury

ObjectiveTo describe the rationale and design of a new patient registry (Koma Outcome von Patienten der Frührehabilitation–Register [KOPF-R; Registry for Coma Outcome in Patients Undergoing Acute Rehabilitation]) that has the scope to examine determinants of long-term outcome and functioning of patients with severe disorders of consciousness (DOC).DesignProspective multicenter neurologic rehabilitation registry.SettingFive specialized neurologic rehabilitation facilities.ParticipantsPatients (N=42) with DOC in vegetative state or minimally conscious state (MCS) as defined by the Coma Recovery Scale–Revised (CRS-R) after brain injury. Patients are being continuously enrolled. The data presented here cover the enrollment period from August 2011 to January 2012.InterventionsNot applicable.Main Outcome MeasuresCRS-R, FIM, and emergence from MCS.ResultsThe registry was set up in 5 facilities across the state of Bavaria/Germany with a special expertise in the rehabilitation of acquired brain injury. Inclusion of patients started in August 2011. Measures include sociodemographic and clinical characteristics, course of acute therapy, electrophysiologic measures (evoked potentials, electroencephalogram), neuron-specific enolase, current medication, functioning, cognition, participation, quality of life, quantity and characteristics of rehabilitation therapy, caregiver burden, and attitudes toward end-of-life decisions. Main diagnoses were traumatic brain injury (24%), intracerebral or subarachnoid hemorrhage (31%), and anoxic-ischemic encephalopathy (45%). Mean CRS-R score ± SD at admission to rehabilitation was 5.9±3.3, and mean FIM score ± SD at admission was 18±0.4.ConclusionsThe KOPF-R aspires to contribute prospective data on prognosis in severe DOC.