FRONTotemporal dementia Incidence European Research Study-FRONTIERS: Rationale and design.

Abstract

INTRODUCTION\nThe incidence of Frontotemporal Lobar Degeneration (FTLD)-related disorders and their characteristics are not well known. The FRONTotemporal dementia Incidence European Research Study (FRONTIERS) is designed to fill this gap.\n\n\nMETHODS\nFRONTIERS is a European prospective, observational population study based on multinational registries. FRONTIERS comprises 11 tertiary referral centers across Europe with long-lasting experience in FTLD-related disorders and comprehensive regional referral networks, enabling incidence estimation over well-defined geographical areas.\n\n\nENDPOINTS\nThe primary endpoints are (1) the incidence of FTLD-related disorders across Europe; (2) geographic trends of FTLD-related disorders; (3) the distribution of FTLD phenotypes in different populations and ethnicities in Europe; (4) inheritance of FTLD-related disorders, including the frequencies of monogenic FTLD as compared to overall disease burden; and (5) implementation of data banking for clinical and biological material.\n\n\nEXPECTED IMPACTS\nFRONTIERS will improve the understanding of FTLD-related disorders and their epidemiology, promoting appropriate public health service policies and treatment strategies.