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FRONTotemporal dementia Incidence European Research Study—FRONTIERS: Rationale and design
Author(s) -
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
Publication year - 2022
Publication title -
alzheimer's and dementia
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 6.713
H-Index - 118
eISSN - 1552-5279
pISSN - 1552-5260
DOI - 10.1002/alz.12414
Subject(s) - frontotemporal lobar degeneration , incidence (geometry) , epidemiology , dementia , frontotemporal dementia , medicine , observational study , population , disease , referral , environmental health , pathology , family medicine , physics , optics
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.