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Review
. 2022 Mar;18(3):498-506.
doi: 10.1002/alz.12414. Epub 2021 Aug 2.

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

Barbara Borroni  1 , Caroline Graff  2   3 , Orla Hardiman  4   5 , Albert C Ludolph  6   7 , Fermin Moreno  8   9 , Markus Otto  6 , Marco Piccininni  10 , Anne M Remes  11   12 , James B Rowe  13 , Harro Seelaar  14 , Elka Stefanova  15 , Latchezar Traykov  16 , Giancarlo Logroscino  17 ; FRONTIERS
Affiliations
Review

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

Barbara Borroni et al. Alzheimers Dement. 2022 Mar.

Abstract

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.

Keywords: epidemiology; frontotemporal dementia; frontotemporal lobar degeneration; incidence; rare diseases; registry.

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Figures

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FIGURE 1
List of participating geographical areas
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