title: Rationale and design of the prospective German registry of outcome in patients with severe disorders of consciousness after acute brain injury.
abstract: OBJECTIVE
  To 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).
  
  
  METHODS
  Prospective multicenter neurologic rehabilitation registry.
  
  
  METHODS
  Five specialized neurologic rehabilitation facilities.
  
  
  METHODS
  Patients (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.
  
  
  METHODS
  Not applicable.
  
  
  METHODS
  CRS-R, FIM, and emergence from MCS.
  
  
  RESULTS
  The 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.
  
  
  CONCLUSIONS
  The KOPF-R aspires to contribute prospective data on prognosis in severe DOC.
authors.affiliation: Institute of Medical Information Processing, Biometry and Epidemiology, University of Munich, Munich; Integrated Center for Research and Treatment of Vertigo, Balance and Ocular Motor Disorders (IFB(LMU)), University of Munich, Munich.
authors.forename: Eva
authors.initials: E
authors.lastname: Grill
authors.forename: Anke-Maria
authors.initials: AM
authors.lastname: Klein
authors.forename: Kaitlen
authors.initials: K
authors.lastname: Howell
authors.forename: Marion
authors.initials: M
authors.lastname: Arndt
authors.forename: Lydia
authors.initials: L
authors.lastname: Bodrozic
authors.forename: Jürgen
authors.initials: J
authors.lastname: Herzog
authors.forename: Ralf
authors.initials: R
authors.lastname: Jox
authors.forename: Eberhardt
authors.initials: E
authors.lastname: Koenig
authors.forename: Ulrich
authors.initials: U
authors.lastname: Mansmann
authors.forename: Friedemann
authors.initials: F
authors.lastname: Müller
authors.forename: Thomas
authors.initials: T
authors.lastname: Müller
authors.forename: Dennis
authors.initials: D
authors.lastname: Nowak
authors.forename: Matthias
authors.initials: M
authors.lastname: Schaupp
authors.forename: Andreas
authors.initials: A
authors.lastname: Straube
authors.forename: Andreas
authors.initials: A
authors.lastname: Bender
mesh_terms: D000208:Acute Disease; D000328:Adult; D000368:Aged; D001930:Brain Injuries / Q000150:complications* / Q000401:mortality; D003071:Cognition; D003625:Data Collection; D005260:Female; D005858:Germany; D006801:Humans; D053208:Kaplan-Meier Estimate; D008297:Male; D008875:Middle Aged; D018458:Persistent Vegetative State / Q000209:etiology* / Q000534:rehabilitation*; D011446:Prospective Studies; D011788:Quality of Life; D020127:Recovery of Function; D012042:Registries; D012047:Rehabilitation Centers; D016896:Treatment Outcome
keywords: AIE; Anoxia; Brain injuries; CI; CRS-R; Coma Recovery Scale–Revised; DOC; Disability evaluation; EEG; ICU; KOPF-R; Koma Outcome von Patienten der Frührehabilitation– Register [Registry for Coma Outcome in Patients Undergoing Acute Rehabilitation]; LST; MCS; NSE; NTBI; Persistent vegetative state; QOL; Registries; Rehabilitation; SAH; SEPs; TBI; VS; anoxic-ischemic encephalopathy; confidence interval; disorders of consciousness; electroencephalogram; intensive care unit; life-sustaining therapy; minimally conscious state; neuron-specific enolase; nontraumatic brain injury; quality of life; somatosensory evoked potentials; subarachnoid hemorrhage; traumatic brain injury; vegetative state