Multicentre registry of brain-injured patients with disorder of consciousness: rationale and preliminary data

• Published in: Functional neurology 2018-01, Vol.33 (1), p.19-30
• Main Authors: Pascarella, A, Fiorenza, S, Masotta, O, Tibollo, V, Vella, D, Nardone, Anna Maria, Rossi, Marta, Volanti, P, Madonia, F, Cstronovo, Gaetano, De Cicco, D, Guarnaschelli, Caterina, Achilli, M P, Chiapparino, C, Angelillo, M T, Tommasi, M A, Pisano, F, Grioni, G, Vezzadini, G, Ferriero, G, Salvaderi, S, Bellazzi, R, Estraneo, Anna
• Format: Article
• Language: English
• Subjects: Accuracy; Adolescent; Adult; Aged; Aged, 80 and over; Caregivers; Coma; Consciousness; Consciousness Disorders - diagnosis; Consciousness Disorders - rehabilitation; Electroencephalography; Female; Follow-Up Studies; Humans; Italy; Male; Medical imaging; Middle Aged; Neurological Rehabilitation - statistics & numerical data; Outcome Assessment, Health Care - statistics & numerical data; Patients; Prospective Studies; Registries - statistics & numerical data; Rehabilitation; Studies; Task forces; Unconsciousness; Young Adult
• ISSN: 1971-3274; 0393-5264; 1971-3274
• DOI: 10.11138/FNeur/2018.33.1.019

Diagnostic accuracy and reliable estimation of clinical evolution are challenging issues in the management of patients with disorders of consciousness (DoC). Longitudinal systematic investigations conducted in large cohorts of patients with DoC could make it possible to identify reliable diagnostic and prognostic markers. On the basis of this consideration, we devised a multicentre prospective registry for patients with DoC admitted to ten intensive rehabilitation units. The registry collects homogeneous and detailed data on patients' demographic and clinical features, neurophysiological and neuroimaging findings, and medical and surgical complications. Here we present the rationale and the design of the registry and the preliminary results obtained in 53 patients with DoC (vegetative state or minimally conscious state) enrolled during the first seven months of the study. Data at 6-month post-injury follow-up were available for 46 of them. This registry could be an important tool for collecting high-quality data through the application of rigorous methods, and it could be used in the routine management of patients with DoC admitted to rehabilitation settings.