FRONTotemporal dementia Incidence European Research Study—FRONTIERS : rationale and design
Borroni, Barbara; Graff, Caroline; Hardiman, Orla; Ludolph, Albert C.; Moreno, Fermin; Otto, Markus; Piccininni, Marco; Remes, Anne M; Rowe, James B; Seelaar, Harro; Stefanova, Elka; Traykov, Latchezar; Logroscino, Giancarlo; FRONTIERS (2021-08-02)
Borroni, B, Graff, C, Hardiman, O, et al. FRONTotemporal dementia Incidence European Research Study—FRONTIERS: Rationale and design. Alzheimer's Dement. 2022; 18: 498– 506. https://doi.org/10.1002/alz.12414
© 2021 The Authors. Alzheimer's & Dementia published by Wiley Periodicals LLC on behalf of Alzheimer's Association.This is an open access article under the terms of the Creative Commons Attribution-NonCommercial License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited and is not used for commercial purposes.
https://creativecommons.org/licenses/by-nc/4.0/
https://urn.fi/URN:NBN:fi-fe2022082355992
Tiivistelmä
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.
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