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

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Borroni, Barbara 
Graff, Caroline 
Hardiman, Orla 
Ludolph, Albert C 
Moreno, Fermin 

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.

epidemiology, frontotemporal dementia, frontotemporal lobar degeneration, incidence, rare diseases, registry, Cohort Studies, Frontotemporal Dementia, Frontotemporal Lobar Degeneration, Humans, Incidence, Prospective Studies
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Alzheimers Dement
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Cambridge University Hospitals NHS Foundation Trust (CUH) (146281)
MRC (unknown)
Wellcome Trust (220258/Z/20/Z)
Medical Research Council (MR/M009041/1)
National Institute for Health and Care Research (IS-BRC-1215-20014)