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

被引：15

作者：

Borroni, Barbara ^{[1
,2
]}

Graff, Caroline ^{[3
,4
]}

Hardiman, Orla ^{[5
,6
]}

Ludolph, Albert C. ^{[7
,8
]}

Moreno, Fermin ^{[9
,10
]}

Otto, Markus ^{[7
]}

Piccininni, Marco ^{[11
]}

Remes, Anne M. ^{[12
,13
]}

Rowe, James B. ^{[14
,15
]}

Seelaar, Harro ^{[16
,17
]}

Stefanova, Elka ^{[18
]}

Traykov, Latchezar ^{[19
]}

Logroscino, Giancarlo ^{[20
]}

机构：

[1] ASST Spedali Civili Brescia, Neurol Unit, Ctr Neurodegenerat Disorders, Brescia, Italy

[2] Univ Brescia, Brescia, Italy

[3] Karolinska Inst, Div Neurogeriatr, Dept NVS, Stockholm, Sweden

[4] Karolinska Univ Hosp Solna, Unit Hereditary Dementia, Stockholm, Sweden

[5] Trinity Biomed Sci Inst, Trinity Coll Dublin, Acad Unit Neurol, Dublin, Ireland

[6] Beaumont Hosp, Dept Neurol, Dublin, Ireland

[7] Univ Hosp Ulm, Dept Neurol, Ulm, Germany

[8] DZNE, Ulm, Germany

[9] Hosp Univ Donostia, Cognit Disorders Unit, Dept Neurol, San Sebastian, Spain

[10] Biodonostia Hlth Res Inst, Neurosci Area, San Sebastian, Spain

[11] Universitatsmed Berlin, Inst Publ Hlth, Berlin, Germany

[12] Univ Oulu, Unit Clin Neurosci, Neurol, Oulu, Finland

[13] Oulu Univ Hosp, Med Res Ctr, Oulu, Finland

[14] Univ Cambridge, Dept Clin Neurosci, MRC Cognit & Brain Sci Unit, Cambridge, England

[15] Univ Cambridge, Cambridge Univ Hosp NHS Trust, Cambridge, England

[16] Erasmus MC, Dept Neurol, Rotterdam, Netherlands

[17] Erasmus MC, Alzheimer Ctr, Rotterdam, Netherlands

[18] Univ Belgrade, Fac Med, Neurol Clin, Univ Clin Ctr Serbia, Belgrade, Serbia

[19] Med Univ Sofia, Dept Neurol, UH Alexandrovska, Sofia, Bulgaria

[20] Univ Bari Aldo Moro, Ctr Neurodegenerat Dis & Aging Brain, Pia Fdn Culto & Relig, Cardinale Giovanni Pan, Bari, Italy

来源：

ALZHEIMERS & DEMENTIA | 2022年 / 18卷 / 03期

基金：

英国医学研究理事会; 芬兰科学院; 爱尔兰科学基金会; 瑞典研究理事会;

关键词：

epidemiology; frontotemporal dementia; frontotemporal lobar degeneration; incidence; rare diseases; registry; AMYOTROPHIC-LATERAL-SCLEROSIS; BEHAVIORAL VARIANT; PREVALENCE; EPIDEMIOLOGY; PATHOLOGY; DIAGNOSIS; CRITERIA; DISEASE; SCALE; ONSET;

D O I：

10.1002/alz.12414

中图分类号：

R74 [神经病学与精神病学];

学科分类号：

摘要：

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.

引用

页码：498 / 506

页数：9

共 40 条

[1] Criteria for the diagnosis of corticobasal degeneration [J].

Armstrong, Melissa J. ;

Litvan, Irene ;

Lang, Anthony E. ;

Bak, Thomas H. ;

Bhatia, Kailash P. ;

Borroni, Barbara ;

Boxer, Adam L. ;

Dickson, Dennis W. ;

Grossman, Murray ;

Hallett, Mark ;

Josephs, Keith A. ;

Kertesz, Andrew ;

Lee, Suzee E. ;

Miller, Bruce L. ;

Reich, Stephen G. ;

Riley, David E. ;

Tolosa, Eduardo ;

Troester, Alexander I. ;

Vidailhet, Marie ;

Weiner, William J. .

NEUROLOGY, 2013, 80 (05) :496-503

[2] Analysis of multicentre epidemiological studies: contrasting fixed or random effects modelling and meta-analysis [J].

Basagana, Xavier ;

Pedersen, Marie ;

Barrera-Gomez, Jose ;

Gehring, Ulrike ;

Giorgis-Allemand, Lise ;

Hoek, Gerard ;

Stafoggia, Massimo ;

Nieuwenhuijsen, Mark J. ;

Brunekreef, Bert ;

Slama, Remy .

INTERNATIONAL JOURNAL OF EPIDEMIOLOGY, 2018, 47 (04) :1343-1354

[3] The epidemiology of ALS and the role of population-based registries [J].

Beghi, Ettore ;

Logroscino, Giancarlo ;

Chio, Adriano ;

Hardiman, Orla ;

Mitchell, Douglas ;

Swingler, Robert ;

Traynor, Bryan J. .

BIOCHIMICA ET BIOPHYSICA ACTA-MOLECULAR BASIS OF DISEASE, 2006, 1762 (11-12) :1150-1157

[4] Phenotypic heterogeneity of monogenic frontotemporal dementia [J].

Benussi, Alberto ;

Padovani, Alessandro ;

Borroni, Barbara .

FRONTIERS IN AGING NEUROSCIENCE, 2015, 7

[5] Prevalence and Demographic Features of Early-Onset Neurodegenerative Dementia in Brescia County, Italy [J].

Borroni, Barbara ;

Alberici, Antonella ;

Grassi, Mario ;

Rozzini, Luca ;

Turla, Marinella ;

Zanetti, Orazio ;

Bianchetti, Angelo ;

Gilberti, Nicola ;

Bonvicini, Cristian ;

Dalla Volta, Giorgio ;

Rozzini, Renzo ;

Padovani, Alessandro .

ALZHEIMER DISEASE & ASSOCIATED DISORDERS, 2011, 25 (04) :341-344

[6] TDP-43 pathology and neuronal loss in amyotrophic lateral sclerosis spinal cord [J].

Brettschneider, Johannes ;

Arai, Kimihito ;

Del Tredici, Kelly ;

Toledo, Jon B. ;

Robinson, John L. ;

Lee, Edward B. ;

Kuwabara, Satoshi ;

Shibuya, Kazumoto ;

Irwin, David J. ;

Fang, Lubin ;

Van Deerlin, Vivianna M. ;

Elman, Lauren ;

McCluskey, Leo ;

Ludolph, Albert C. ;

Lee, Virginia M. -Y. ;

Braak, Heiko ;

Trojanowski, John Q. .

ACTA NEUROPATHOLOGICA, 2014, 128 (03) :423-437

[7] Aggregation of Neurologic and Neuropsychiatric Disease in Amyotrophic Lateral Sclerosis Kindreds: A Population-Based Case-Control Cohort Study of Familial and Sporadic Amyotrophic Lateral Sclerosis [J].

Byrne, Susan ;

Heverin, Mark ;

Elamin, Marwa ;

Bede, Peter ;

Lynch, Catherine ;

Kenna, Kevin ;

MacLaughlin, Russell ;

Walsh, Cathal ;

Al Chalabi, Ammar ;

Hardiman, Orla .

ANNALS OF NEUROLOGY, 2013, 74 (05) :699-708

[8] Epidemiology of early onset dementia and its clinical presentations in the province of Modena, Italy [J].

Chiari, Annalisa ;

Vinceti, Giulia ;

Adani, Giorgia ;

Tondelli, Manuela ;

Galli, Chiara ;

Fiondella, Luigi ;

Costa, Manuela ;

Molinari, Maria A. ;

Filippini, Tommaso ;

Zamboni, Giovanna ;

Vinceti, Marco .

ALZHEIMERS & DEMENTIA, 2021, 17 (01) :81-88

[9] Prevalence, characteristics, and survival of frontotemporal lobar degeneration syndromes [J].

Coyle-Gilchrist, Ian T. S. ;

Dick, Katrina M. ;

Patterson, Karalyn ;

Rodriquez, Patricia Vazquez ;

Wehmann, Eileen ;

Wilcox, Alicia ;

Lansdall, Claire J. ;

Dawson, Kate E. ;

Wiggins, Julie ;

Mead, Simon ;

Brayne, Carol ;

Rowe, James B. .

NEUROLOGY, 2016, 86 (18) :1736-1743

[10] The prevalence of frontal variant frontotemporal dementia and the frontal lobe syndrome in a population based sample of 85 year olds [J].

Gislason, TB ;

Sjögren, M ;

Larsson, L ;

Skoog, I .

JOURNAL OF NEUROLOGY NEUROSURGERY AND PSYCHIATRY, 2003, 74 (07) :867-871

← 1 2 3 4 →