Demographic changes in a large motor neuron disease cohort in Portugal: a 27 year experience

References

• Al-Chalabi A, Hardiman O, Kiernan MC, Chiò A, Rix-Brooks B, van den Berg LH. Amyotrophic lateral sclerosis: moving towards a new classification system. Lancet Neurol. 2016;15:1182–94.
   PubMed Web of Science ®Google Scholar
• Swinnen B, Robberecht W. The phenotypic variability of amyotrophic lateral sclerosis. Nat Rev Neurol. 2014;10:661–70.
   PubMed Web of Science ®Google Scholar
• Brown RH, Al-Chalabi A. Amyotrophic lateral sclerosis. Longo DL, editor. N Engl J Med. 2017;377:162–72.
   PubMed Web of Science ®Google Scholar
• Pinto S, Gromicho M, Oliveira Santos MO, Swash M, de Carvalho M. Respiratory onset in amyotrophic lateral sclerosis: clinical features and spreading pattern. Amyotroph Lateral Scler Frontotemporal Degener. 2023;24:40–4.
   PubMed Web of Science ®Google Scholar
• Kandler K, Witzel S, Eder K, Rothenbacher D, Nagel G, Peter RS, et al. Phenotyping of the thoracic-onset variant of amyotrophic lateral sclerosis. J Neurol Neurosurg Psychiatry. 2022;93:563–5.
   PubMed Web of Science ®Google Scholar
• Gromicho M, Figueiral M, Uysal H, Grosskreutz J, Kuzma‐Kozakiewicz M, Pinto S, et al. Spreading in ALS: The relative impact of upper and lower motor neuron involvement. Ann Clin Transl Neurol. 2020;7:1181–92.
   PubMed Web of Science ®Google Scholar
• de Carvalho M, Scotto M, Swash M. Clinical patterns in progressive muscular atrophy (PMA): A prospective study. Amyotroph Lateral Scler. 2007;8:296–9.
   PubMed Web of Science ®Google Scholar
• Shefner JM, Al-Chalabi A, Baker MR, Cui LY, de Carvalho M, Eisen A, et al. A proposal for new diagnostic criteria for ALS. Clin Neurophysiol. 2020;131:1975–8.
   PubMed Web of Science ®Google Scholar
• Pugdahl K, Camdessanché JP, Cengiz B, de Carvalho M, Liguori R, Rossatto C, et al. Gold Coast diagnostic criteria increase sensitivity in amyotrophic lateral sclerosis. Clin Neurophysiol. 2021;132:3183–9.
   PubMed Web of Science ®Google Scholar
• Turner MR, Barohn RJ, Corcia P, Fink JK, Harms MB, Kiernan MC, et al. Primary lateral sclerosis: consensus diagnostic criteria. J Neurol Neurosurg Psychiatry. 2020; 191:373–7.
   PubMed Web of Science ®Google Scholar
• Garg N, Park SB, Vucic S, Yiannikas C, Spies J, Howells J, et al. Differentiating lower motor neuron syndromes. J Neurol Neurosurg Psychiatry. 2017;88:474–83.
   PubMed Web of Science ®Google Scholar
• Wang H, Tian Y, Wu J, Luo S, Zheng C, Sun C, et al. Update on the pathogenesis, clinical diagnosis, and treatment of hirayama disease. Front Neurol. 2021;12: 811943.
   PubMed Web of Science ®Google Scholar
• Brooks BR. El escorial world federation of neurology criteria for the diagnosis of amyotrophic lateral sclerosis. J Neurol Sci. 1994;124:96–107.
   PubMed Web of Science ®Google Scholar
• The Amyotrophic Lateral Sclerosis Functional Rating Scale. Assessment of activities of daily living in patients with amyotrophic lateral sclerosis. The ALS CNTF treatment study (ACTS) phase I-II Study Group. Arch Neurol 1996;53:141–7.
   PubMed Web of Science ®Google Scholar
• Marques Couto C, de Melo Queiroz E, Nogueira R, Pires Duarte Küsel AP, JM, Nascimento O. A Brazilian multicentre study on the clinical and epidemiological profiles of 1116 patients with amyotrophic lateral sclerosis and its phenotypic variants. Amyotroph Lateral Scler Frontotemporal Degener. 2022;23:353–62.
   PubMed Web of Science ®Google Scholar
• Leighton DJ, Newton J, Stephenson LJ, Colville S, Davenport R, Gorrie G, et al. Changing epidemiology of motor neurone disease in Scotland. J Neurol. 2019;266:817–25.
   PubMed Web of Science ®Google Scholar
• Marin B, Logroscino G, Boumédiene F, Labrunie A, Couratier P, Babron MC, et al. Clinical and demographic factors and outcome of amyotrophic lateral sclerosis in relation to population ancestral origin. Eur J Epidemiol. 2016;31:229–45.
   PubMed Web of Science ®Google Scholar
• Rowland LP. Progressive muscular atrophy and other lower motor neuron syndromes of adults. Muscle Nerve. 2010;41:161–5.
   PubMed Web of Science ®Google Scholar
• Singer MA, Statland JM, Wolfe GI, Barohn RJ. Primary lateral sclerosis. Muscle Nerve. 2007;35:291–302.
   PubMed Web of Science ®Google Scholar
• Tartaglia MC, Rowe A, Findlater K, Orange JB, Grace G, Strong MJ. Differentiation between primary lateral sclerosis and amyotrophic lateral sclerosis. Arch Neurol. 2007;64:232–6.
   PubMedGoogle Scholar
• Steinbach R, Batyrbekova M, Gaur N, Voss A, Stubendorff B, Mayer TE, et al. Applying the D50 disease progression model to gray and white matter pathology in amyotrophic lateral sclerosis. Neuroimage Clin 2020;25. doi:10.1016/j.nicl.2019.102094
   Web of Science ®Google Scholar
• Prell T, Stubendorff B, Le TT, Gaur N, Tadić V, Rödiger A, et al. Reaction to endoplasmic reticulum stress via ATF6 in amyotrophic lateral sclerosis deteriorates with aging. Front Aging Neurosci. 2019;11. doi:10.3389/fnagi.2019.00005.
   PubMed Web of Science ®Google Scholar
• Requardt MV, Görlich D, Grehl T, Boentert M. Clinical determinants of disease progression in amyotrophic lateral sclerosis—a retrospective cohort study. Jcm. 2021;10:1623.
   Google Scholar
• Raymond J, Oskarsson B, Mehta P, Horton K. Clinical characteristics of a large cohort of US participants enrolled in the National Amyotrophic Lateral Sclerosis (ALS) Registry, 2010–2015. Amyotroph Lateral Scler Frontotemporal Degener. 2019;20:413–20.
   PubMed Web of Science ®Google Scholar
• Jericó I, Elizalde-Beiras I, Pagola I, Torné L, Galbete A, Delfrade-Osinaga J, et al. Clinical features and incidence trends of amyotrophic lateral sclerosis in Navarre, Spain, 2007–2018: a population-based study. Amyotroph Lateral Scler Frontotemporal Degener. 2021;22:401–9.
   PubMed Web of Science ®Google Scholar
• Chio A, Calvo A, Moglia C, Mazzini L, Mora G, PARALS study group Phenotypic heterogeneity of amyotrophic lateral sclerosis: a population based study. J Neurol Neurosurg Psychiatry. 2011;82:740–6.
   PubMed Web of Science ®Google Scholar
• Gromicho M, Kuzma-Kozakiewicz M, Szacka K, Nieporecki K, Andersen PM, Grosskreutz J, et al. Motor neuron disease beginning with frontotemporal dementia: clinical features and progression. Amyotroph Lateral Scler Frontotemporal Degener. 2021;22:508–16.
   PubMed Web of Science ®Google Scholar
• Rosenbohm A, Peter RS, Erhardt S, Lulé D, Rothenbacher D, Ludolph AC, et al. Epidemiology of amyotrophic lateral sclerosis in Southern Germany. J Neurol. 2017;264:749–57.
   PubMed Web of Science ®Google Scholar
• Chen L, Xu L, Tang L, Xia K, Tian D, Zhang G, et al. Trends in the clinical features of amyotrophic lateral sclerosis: a 14‐year Chinese cohort study. Eur J Neurol. 2021;28:2893–900.
   PubMedGoogle Scholar
• Czaplinski A, Yen AA, Simpson EP, Appel SH. Slower disease progression and prolonged survival in contemporary patients with amyotrophic lateral sclerosis. Arch Neurol. 2006;63:1139–43.
   PubMedGoogle Scholar
• Chiò A, Mora G, Moglia C, Manera U, Canosa A, Cammarosano S, et al. Secular trends of amyotrophic lateral sclerosis. JAMA Neurol. 2017;74:1097–104.
   PubMed Web of Science ®Google Scholar
• Censos: População por grandes grupos etários | Pordata [Internet]. [cited 2023 May 4]. Available from: https://www.pordata.pt/portugal/populacao+residente+segundo+os+censos+total+e+por+grandes+grupos+etarios-512-2541
   Google Scholar
• Mitsumoto H, Kasarskis EJ, Simmons Z. Hastening the diagnosis of amyotrophic lateral sclerosis. Neurology 2022;99:60–8.
   PubMed Web of Science ®Google Scholar
• Bianchi E, Pupillo E, de Feudis A, Enia G, Vitelli E, Beghi E. Trends in survival of ALS from a population-based registry. Amyotroph Lateral Scler Frontotemporal Degener. 2022;23:344–52.
   PubMed Web of Science ®Google Scholar
• Traynor BJ, Alexander M, Corr B, Frost E, Hardiman O. Effect of a multidisciplinary amyotrophic lateral sclerosis (ALS) clinic on ALS survival: a population based study, 1996–2000. J Neurol Neurosurg Psychiatry. 2003;74:1258–61.
   PubMed Web of Science ®Google Scholar
• Forbes RB, Colville S, Cran GW, Swingler RJ. Unexpected decline in survival from amyotrophic lateral sclerosis/motor neurone disease. J Neurol Neurosurg Psychiatry. 2004;75:1753–5.
   PubMed Web of Science ®Google Scholar
• Bourke SC, Tomlinson M, Williams TL, Bullock RE, Shaw PJ, Gibson GJ. Effects of non-invasive ventilation on survival and quality of life in patients with amyotrophic lateral sclerosis: a randomised controlled trial. Lancet Neurol. 2006;5:140–7.
   PubMed Web of Science ®Google Scholar
• Testa D, Lovati R, Ferrarini M, Salmoiraghi F, Filippini G. Survival of 793 patients with amyotrophic lateral sclerosis diagnosed over a 28-year period. Amyotrophic Lateral Sclerosis and Other Motor Neuron Disorders. 2004;5:208–12.
   PubMed Web of Science ®Google Scholar
• Sorenson EJ, Stalker AP, Kurland LT, Windebank AJ. Amyotrophic lateral sclerosis in Olmsted County, Minnesota, 1925 to 1998. Neurology. 2002;59:280–2.
   PubMed Web of Science ®Google Scholar
• Pugliatti M, Parish LD, Cossu P, Leoni S, Ticca A, Saddi MV, et al. Amyotrophic lateral sclerosis in Sardinia, insular Italy, 1995–2009. J Neurol. 2013;260:572–9.
   PubMed Web of Science ®Google Scholar
• Hardiman O, Al-Chalabi A, Chio A, Corr em, Logroscino G, Robberecht W. Amyotrophic lateral sclerosis. vol. 3, Nature Reviews Disease Primers. Nature Publishing Group; 2017.
   Google Scholar