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FRONTotemporal dementia Incidence European Research Study-FRONTIERS: Rationale and design.
Alzheimer's & Dementia  (IF21.566),  Pub Date : 2021-08-02, DOI: 10.1002/alz.12414
Barbara Borroni,Caroline Graff,Orla Hardiman,Albert C Ludolph,Fermin Moreno,Markus Otto,Marco Piccininni,Anne M Remes,James B Rowe,Harro Seelaar,Elka Stefanova,Latchezar Traykov,Giancarlo Logroscino,

INTRODUCTION The 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. METHODS FRONTIERS 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. ENDPOINTS The 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. EXPECTED IMPACTS FRONTIERS will improve the understanding of FTLD-related disorders and their epidemiology, promoting appropriate public health service policies and treatment strategies.