The Italian dementia with Lewy bodies study group (DLB-SINdem): toward a standardization of clinical procedures and multicenter cohort studies design.
Dementia with Lewy bodies (DLB) causes elevated outlays for the National Health Systems due to high institutionalization rate and patients' reduced quality of life and high mortality. Furthermore, DLB is often misdiagnosed as Alzheimer's disease. These data motivate harmonized multicenter longitudinal cohort studies to improve clinical management and therapy monitoring. The Italian DLB study group of the Italian Neurological Society for dementia (SINdem) developed and emailed a semi-structured questionnaire to 572 national dementia centers (from primary to tertiary) to prepare an Italian large longitudinal cohort. The questionnaire surveyed: (1) prevalence and incidence of DLB; (2) clinical assessment; (3) relevance and availability of diagnostic tools; (4) pharmacological management of cognitive, motor, and behavioural disturbances; (5) causes of hospitalization, with specific focus on delirium and its treatment. Overall, 135 centers (23.6 %) contributed to the survey. Overall, 5624 patients with DLB are currently followed by the 135 centers in a year (2042 of them are new patients). The percentage of DLB patients was lower (27 ± 8 %) than that of Alzheimer's disease and frontotemporal dementia (56 ± 27 %) patients. The majority of the centers (91 %) considered the clinical and neuropsychological assessments as the most relevant procedure for a DLB diagnosis. Nonetheless, most of the centers has availability of magnetic resonance imaging (MRI; 95 %), electroencephalography (EEG; 93 %), and FP-CIT single photon emission-computerized tomography (SPECT; 75 %) scan for clinical applications. It will be, therefore, possible to recruit a large harmonized Italian cohort of DLB patients for future cross-sectional and longitudinal multicenter studies.
Department of Neuroscience Imaging and Clinical Sciences, University G.d'Annunzio of Chieti-Pescara, Via dei Vestini, 66100, Chieti, Italy. l.bonanni@unich.it.
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http://orcid.org/0000-0001-7443-9233
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Bonanni
Department of Neurosciences, University of Padova, Padua, Italy.|IRCCS San Camillo Hospital Foundation, Venice, Italy.
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Cagnin
Division of Neuroscience, Neuroimaging Research Unit, and Department of Neurology, Institute of Experimental Neurology, San Raffaele Scientific Institute, Milan, Italy.
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Agosta
Department of Physiology and Pharmacology, University of Rome "La Sapienza", Rome, Italy.|IRCCS San Raffaele Pisana, Rome, Italy.
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Babiloni
Neurology Unit, Department of Clinical and Experimental Sciences, University of Brescia, Piazza Spedali Civili 1, 25100, Brescia, Italy.
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Borroni
Neuroimaging Laboratory, IRCCS Santa Lucia Foundation, Rome, Italy.
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Bozzali
Centro Regionale di Neurogenetica ASP CZ, Lamezia Terme, Italy.
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Bruni
Division of Neuroscience, Neuroimaging Research Unit, and Department of Neurology, Institute of Experimental Neurology, San Raffaele Scientific Institute, Milan, Italy.
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Filippi
Neurology Unit, Deptartment of Pathophysiology and Transplantation, Fondazione Ca' Granda, IRCCS Ospedale Policlinico, University of Milan, Milan, Italy.
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Galimberti
Department of Experimental Biomedicine and Clinical Neuroscience (BioNeC), University of Palermo, Palermo, Italy.
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Monastero
Divisione di Neurologia V e Neuropatologia, Fondazione IRCCS Istituto Neurologico "Carlo Besta", Milan, Italy.
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Muscio
Clinica Neurologica, Centro Disturbi della Memoria, Università di Perugia (I), Perugia, Italy.
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Parnetti
Division of Neuroscience, Nuclear Medicine Unit San Raffaele Hospital, San Raffaele Scientific Institute, Vita-Salute San Raffaele University, Milan, Italy.
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Perani
Neuroimaging Laboratory, IRCCS Santa Lucia Foundation, Rome, Italy.
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Serra
Department of Neurology-Stroke Unit and Laboratory of Neuroscience, IRCCS Istituto Auxologico Italiano, Milan, 20149, Italy.|Department of Pathophysiology and Transplantation, "Dino Ferrari" Center, Università degli Studi di Milano, Milan, 20122, Italy.
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Silani
Divisione di Neurologia V e Neuropatologia, Fondazione IRCCS Istituto Neurologico "Carlo Besta", Milan, Italy.
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Tiraboschi
Neurology Unit, Department of Clinical and Experimental Sciences, University of Brescia, Piazza Spedali Civili 1, 25100, Brescia, Italy.
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Padovani
D000544:Alzheimer Disease / Q000175:diagnosis; D015331:Cohort Studies; D003937:Diagnosis, Differential; D019468:Disease Management; D006801:Humans; D007558:Italy; D020961:Lewy Body Disease / Q000175:diagnosis* / Q000628:therapy*; D012107:Research Design; D011795:Surveys and Questionnaires
Dementia with Lewy bodies; Standardization of diagnostic procedures; Survey