August 11, 2021
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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Author: 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,
FRONTIERS
