University of Oulu

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.

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

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Author: Borroni, Barbara1; Graff, Caroline2,3; Hardiman, Orla4,5;
Organizations: 1Centre for Neurodegenerative Disorders, Neurology Unit, ASST Spedali Civili Brescia and University of Brescia, Brescia, Italy
2Department NVS, Division of Neurogeriatrics, Karolinska Institutet, Stockholm, Sweden
3Unit for Hereditary Dementia, Theme Aging, Karolinska University Hospital-Solna, Stockholm, Sweden
4Academic Unit of Neurology, Trinity Biomedical Sciences Institute, Trinity College Dublin, Dublin, Ireland
5Department of Neurology, Beaumont Hospital, Dublin, Ireland
6Department of Neurology, University Hospital Ulm, Ulm, Germany
7Deutsches Zentrum für neurodegenerative Erkrankungen (DZNE), Ulm, Germany
8Department of Neurology, Cognitive Disorders Unit, Hospital Universitario Donostia, San Sebastian, Spain
9Neuroscience Area, Biodonostia Health Research Institute, San Sebastian, Spain
10Institute of Public Health, Charité, Universitätsmedizin Berlin, Berlin, Germany
11Unit of Clinical Neuroscience, Neurology, University of Oulu, Oulu, Finland
12Medical Research Center, Oulu University Hospital, Oulu, Finland
13Department of Clinical Neurosciences, MRC Cognition and Brain Sciences Unit, and Cambridge University Hospitals NHS Trust, University of Cambridge, Cambridge, UK
14Department of Neurology and Alzheimer center, Erasmus University Medical Center Rotterdam, Rotterdam, The Netherlands
15Faculty of Medicine, Neurology Clinic, University of Belgrade, University Clinical Center Serbia, Serbia
16Department of Neurology, UH “Alexandrovska”, Medical University Sofia, Sofia, Bulgaria
17Center for Neurodegenerative Diseases and the Aging Brain, Pia Fondazione di Culto e Religione, Cardinale Giovanni Panico, University of Bari-Aldo Moro, Bari, Italy
Format: article
Version: published version
Access: open
Online Access: PDF Full Text (PDF, 0.5 MB)
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Language: English
Published: Elsevier, 2021
Publish Date: 2022-08-23


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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Series: Alzheimer's & dementia. The journal of the Alzheimer's Association
ISSN: 1552-5260
ISSN-E: 1552-5279
ISSN-L: 1552-5260
Volume: 18
Issue: 3
Pages: 498 - 506
DOI: 10.1002/alz.12414
Type of Publication: A2 Review article in a scientific journal
Field of Science: 3124 Neurology and psychiatry
Funding: Frontiers has been partially granted for the first meeting held in Tricase, Italy by the following: Biogen, Cambridge, MA, USA; Alector, South San Francisco, California, USA; and Tecnopolo Puglia per la Medicina di Precisione D.G.R. Regione Puglia n. 2117 of 21.11.2018. Barbara Borroni received honoraria from Alector and Wave Pharmaceuticals; she reported a patent pending on Non Invasive Brain Stimulation method. Caroline Graff received funds from Schörling Foundation, Swedish FTD Initiative, Swedish Dementia Foundation, Swedish Research Council, Swedish Brain Foundation, and Stohnes Foundation Gamla Tjänarinnor; and she received travel funds for participation in a congress as speaker. Orla Hardiman received funds from Science Foundation Ireland Health Research Board, MND Association UK ALSA, and TRICALS Research Motor Neuron; and she received personal fees from Biogen Idec, Cytokinetics Orion, Wave Pharmaceuticals, Biogen, and Novartis. Albert C. Ludolph received funds from State of Baden-Württemberg. Fermin Moreno received funds from Tau Consortium (Grant, Institution) and Instituto de Salud Carlos III (Grant, Institution). Markus Otto received funds from the German Ministry of Science and Technology, EU, Thierry Latran foundation, and FTLD CSF society; he received personal fees from Roche and Axon. Marco Piccininni received funds from Novartis Pharma for a self-initiated research project, unrelated to this work, on migraine remission. He was awarded with a research grant from the Center for Stroke Research Berlin (private donations) for a self-initiated project, unrelated to this work, on causal diagrams. He worked as a consultant for SANITANOVA S.r.l. in 2018; he received travel funds from Department of Clinical Research in Neurology, University of Bari “Aldo Moro” at Pia Fondazione Card. G. Panico and Institution Charité—Universitätsmedizin Berlin. Anne M Remes received funds from Academy of Finland, no. 315460, AMR. James B Rowe received funds from the National Institute for Health Research (NIHR) Cambridge Biomedical Research Centre (BRC-1215-20014), Medical Research Council (SUAG/051 G101400), Welcome Trust, Evelyn Trust, Alzheimer's Research UK, PSP Association, Cambridge Centre for Parkinson-plus; he had a pro bono relationship with Guarantors of Brain, Trustee PSP Association, Trustee, Darwin College; he received personal fees from Asceneuron, UCB, Wave Pharmaceuticals, Biogen, Astex, SV Health, GE Healthcare, Copenhagen University. Harro Seelaar received funds from the ZonMW (project 733050513). Elka Stefanova received funds from the Alzheimer's Association; she received personal fees from Actavis Teva Pharma Swiss KRKA, Actavis Teva Krka. Latchezar Traykov has nothing to disclose. Giancarlo Logroscino received funds from Roche, Amplifon; he received travel funds for participation in a congress as speaker. Open Access Funding provided by Universita degli Studi di Bari Aldo Moro within the CRUI-CARE Agreement.
Academy of Finland Grant Number: 315460
Detailed Information: 315460 (Academy of Finland Funding decision)
Copyright information: © 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.