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

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, observationa...

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Autores principales: 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
Formato: Online Artículo Texto
Lenguaje:English
Publicado: John Wiley and Sons Inc. 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9291221/
https://www.ncbi.nlm.nih.gov/pubmed/34338439
http://dx.doi.org/10.1002/alz.12414
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author 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
author_facet 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
author_sort Borroni, Barbara
collection PubMed
description 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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spelling pubmed-92912212022-07-20 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 Alzheimers Dement Review Articles 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. John Wiley and Sons Inc. 2021-08-02 2022-03 /pmc/articles/PMC9291221/ /pubmed/34338439 http://dx.doi.org/10.1002/alz.12414 Text en © 2021 The Authors. Alzheimer's & Dementia published by Wiley Periodicals LLC on behalf of Alzheimer's Association. https://creativecommons.org/licenses/by-nc/4.0/This is an open access article under the terms of the http://creativecommons.org/licenses/by-nc/4.0/ (https://creativecommons.org/licenses/by-nc/4.0/) License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited and is not used for commercial purposes.
spellingShingle Review Articles
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
FRONTotemporal dementia Incidence European Research Study—FRONTIERS: Rationale and design
title FRONTotemporal dementia Incidence European Research Study—FRONTIERS: Rationale and design
title_full FRONTotemporal dementia Incidence European Research Study—FRONTIERS: Rationale and design
title_fullStr FRONTotemporal dementia Incidence European Research Study—FRONTIERS: Rationale and design
title_full_unstemmed FRONTotemporal dementia Incidence European Research Study—FRONTIERS: Rationale and design
title_short FRONTotemporal dementia Incidence European Research Study—FRONTIERS: Rationale and design
title_sort frontotemporal dementia incidence european research study—frontiers: rationale and design
topic Review Articles
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9291221/
https://www.ncbi.nlm.nih.gov/pubmed/34338439
http://dx.doi.org/10.1002/alz.12414
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