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@ARTICLE{Logroscino:258104,
      author       = {Logroscino, Giancarlo and Piccininni, Marco and Graff,
                      Caroline and Hardiman, Orla and Ludolph, Albert C and
                      Moreno, Fermin and Otto, Markus and Remes, Anne M and Rowe,
                      James B and Seelaar, Harro and Solje, Eino and Stefanova,
                      Elka and Traykov, Latchezar and Jelic, Vesna and Rydell,
                      Melissa Taheri and Pender, Niall and Anderl-Straub, Sarah
                      and Barandiaran, Myriam and Gabilondo, Alazne and Krüger,
                      Johanna and Murley, Alexander G and Rittman, Timothy and van
                      der Ende, Emma L and van Swieten, John C and Hartikainen,
                      Päivi and Stojmenovic, Gorana Mandic and Mehrabian, Shima
                      and Benussi, Luisa and Alberici, Antonella and Dell'Abate,
                      Maria Teresa and Zecca, Chiara and Borroni, Barbara},
      collaboration = {group, FRONTIERS},
      othercontributors = {Belezhanska, Diyana and Bianchetti, Angelo and Binetti,
                          Giuliano and Cotelli, Maria and Cotelli, Maria Sofia and
                          Dreharova, Irena and Filardi, Marco and Fostinelli, Silvia
                          and Ghidoni, Roberta and Gnoni, Valentina and Nacheva,
                          Genoveva and Novaković, Ivana and Padovani, Alessandro and
                          Popivanov, Ivo and Raycheva, Margarita and Stockton,
                          Katherine and Stoyanova, Katya and Suhonen, Noora-Maria and
                          Tainta, Mikel and Toncheva, Draga and Urso, Daniele and
                          Zlatareva, Dora and Zulaica, Miren},
      title        = {{I}ncidence of {S}yndromes {A}ssociated {W}ith
                      {F}rontotemporal {L}obar {D}egeneration in 9 {E}uropean
                      {C}ountries.},
      journal      = {JAMA neurology},
      volume       = {80},
      number       = {3},
      issn         = {2168-6149},
      address      = {Chicago, Ill.},
      publisher    = {American Medical Association},
      reportid     = {DZNE-2023-00566},
      pages        = {279 - 286},
      year         = {2023},
      abstract     = {Diagnostic incidence data for syndromes associated with
                      frontotemporal lobar degeneration (FTLD) in multinational
                      studies are urgent in light of upcoming therapeutic
                      approaches.To assess the incidence of FTLD across Europe.The
                      Frontotemporal Dementia Incidence European Research Study
                      (FRONTIERS) was a retrospective cohort study conducted from
                      June 1, 2018, to May 31, 2019, using a population-based
                      registry from 13 tertiary FTLD research clinics from the UK,
                      the Netherlands, Finland, Sweden, Spain, Bulgaria, Serbia,
                      Germany, and Italy and including all new FTLD-associated
                      cases during the study period, with a combined catchment
                      population of 11 023 643 person-years. Included patients
                      fulfilled criteria for the behavioral variant of
                      frontotemporal dementia (BVFTD), the nonfluent variant or
                      semantic variant of primary progressive aphasia (PPA),
                      unspecified PPA, progressive supranuclear palsy,
                      corticobasal syndrome, or frontotemporal dementia with
                      amyotrophic lateral sclerosis (FTD-ALS). Data were analyzed
                      from July 19 to December 7, 2021.Random-intercept Poisson
                      models were used to obtain estimates of the European FTLD
                      incidence rate accounting for geographic heterogeneity.Based
                      on 267 identified cases (mean [SD] patient age, 66.70 [9.02]
                      years; 156 males $[58.43\%]),$ the estimated annual
                      incidence rate for FTLD in Europe was 2.36 cases per 100 000
                      person-years $(95\%$ CI, 1.59-3.51 cases per 100 000
                      person-years). There was a progressive increase in FTLD
                      incidence across age, reaching its peak at the age of 71
                      years, with 13.09 cases per 100 000 person-years $(95\%$ CI,
                      8.46-18.93 cases per 100 000 person-years) among men and
                      7.88 cases per 100 000 person-years $(95\%$ CI, 5.39-11.60
                      cases per 100 000 person-years) among women. Overall, the
                      incidence was higher among men (2.84 cases per 100 000
                      person-years; $95\%$ CI, 1.88-4.27 cases per 100 000
                      person-years) than among women (1.91 cases per 100 000
                      person-years; $95\%$ CI, 1.26-2.91 cases per 100 000
                      person-years). BVFTD was the most common phenotype (107
                      cases $[40.07\%]),$ followed by PPA (76 $[28.46\%])$ and
                      extrapyramidal phenotypes (69 $[25.84\%]).$ FTD-ALS was the
                      rarest phenotype (15 cases $[5.62\%]).$ A total of 95
                      patients with FTLD $(35.58\%)$ had a family history of
                      dementia. The estimated number of new FTLD cases per year in
                      Europe was 12 057.The findings suggest that FTLD-associated
                      syndromes are more common than previously recognized, and
                      diagnosis should be considered at any age. Improved
                      knowledge of FTLD incidence may contribute to appropriate
                      health and social care planning and in the design of future
                      clinical trials.},
      keywords     = {Male / Humans / Female / Aged / Frontotemporal Dementia:
                      epidemiology / Incidence / Amyotrophic Lateral Sclerosis /
                      Retrospective Studies / Frontotemporal Lobar Degeneration:
                      epidemiology / Syndrome / Europe: epidemiology},
      cin          = {Clinical Study Center Ulm},
      ddc          = {610},
      cid          = {I:(DE-2719)5000077},
      pnm          = {353 - Clinical and Health Care Research (POF4-353)},
      pid          = {G:(DE-HGF)POF4-353},
      typ          = {PUB:(DE-HGF)16},
      pubmed       = {pmid:36716024},
      pmc          = {pmc:PMC9887528},
      doi          = {10.1001/jamaneurol.2022.5128},
      url          = {https://pub.dzne.de/record/258104},
}