The natural history of ALS is changing: Improved survival

References

• Haverkamp LJ, Appel V, Appel SH. Natural history of amyotrophic lateral sclerosis in a database population. Validation of a scoring system and a model for survival prediction. Brain. 1995; 118: 707–19
   PubMed Web of Science ®Google Scholar
• Eisen A, Schulzer M, MacNeil M, Pant B, Mak E. Duration of amyotrophic lateral sclerosis is age dependent. Muscle and Nerve. 1993; 16: 27–32
   PubMed Web of Science ®Google Scholar
• Chancellor A, Slattery J, Fraser H, Warlow C. Risk factors for motor neuron disease: a case-control study based on patients from the Scottish Motor Neuron Disease Register. Journal of Neurology, Neurosurgery & Psychiatry. 1993; 56: 1200–6
   PubMed Web of Science ®Google Scholar
• Armon C. Epidemiology of amyotrophic lateral sclerosis/motor neuron disease. Motor Neuron Disorders, P Shaw, M Strong. Butterworth Heinemann, Philadelphia 2003; 167–206
   Google Scholar
• Munsat T, Andres P, Finison L, Conlon T, Thibodeau L. The natural history of motor neuron loss in amyotrophic lateral sclerosis. Neurology. 1988; 38: 452–8
   PubMed Web of Science ®Google Scholar
• Norris, F, Shepherd, R, Denys, E, , U KMukai, E, Elias, L, , et al. Onset, natural history and outcome in idiopathic adult motor neuron disease. J Neurol Sci. 1993;118:48–55.
   PubMed Web of Science ®Google Scholar
• del Aguila MA, Longstreth WT, Jr, McGuire V, Koepsell TD, van Belle G. Prognosis in amyotrophic lateral sclerosis: a population based study. Neurology. 2003; 60: 813–9
   PubMed Web of Science ®Google Scholar
• Zoccolella S, Beghi E, Palagano G, Fraddosio A, Guerra V, Samarelli V, et al. Predictors of long survival in amyotrophic lateral sclerosis: a population-based study. J Neurol Sci. 2008; 268: 28–32
   PubMed Web of Science ®Google Scholar
• Traynor B, 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
• van den Berg JP, Kalmijn S, Lindeman E, Veldink JH, de Visser M, van der Graaff MM, et al. Multidisciplinary ALS care improves quality of life in patients with ALS. Neurology. 2005; 65: 1264–7
   PubMed Web of Science ®Google Scholar
• Dubinsky R, Chen J, Lai S-M. Trends in hospital utilization and outcome for patients with ALS: analysis of a large U.S. cohort. Neurology. 2006; 67: 777–80
   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 randomized controlled trial. The Lancet Neurology. 2006; 5: 140–7
   PubMed Web of Science ®Google Scholar
• Kleopa KA, Sherman M, Neal B, Romano GJ, Heiman-Patterson T. Bipap improves survival and rate of pulmonary function decline in patients with ALS. J Neurol Sci. 1999; 164: 82–8
   PubMed Web of Science ®Google Scholar
• Aboussouan L, Khan S, Arroliga A. Effect of non-invasive positive-presssure ventilation on pulmonary function, respiratory muscle strength and arterial blood gases in amyotrophic lateral sclerosis. Muscle and Nerve. 2001; 24: 403–9
   PubMed Web of Science ®Google Scholar
• Chio A, Finocchiaro C, Meineri P, Bottacchi E, Schiffer D. Safety and factors related to survival after percutaneous endoscopic gastrostomy in ALS. ALS Percutaneous Endoscopic Gastrostomy Study Group. Neurology. 1999; 53: 1123–5
   PubMed Web of Science ®Google Scholar
• Czaplinski A, Yen AA, Simpson EP, Appel SH. Slower disease progression and prolonged survival in contemporary patients with amyotrophic lateral sclerosis: is the natural history of amyotrophic lateral sclerosis changing?. Arch Neurol. 2006; 63: 1139–43
   PubMedGoogle 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. Amyotroph Lateral Scler Other Motor Neuron Disord. 2004; 5: 208–12
   PubMed Web of Science ®Google Scholar
• Logroscino G, Traynor B, Hardiman O, Chio A, Couratier P, Mitchell J, et al. Descriptive epidemiology of amyotrophic lateral sclerosis: new evidence and unsolved issues. J Neurol Neurosurg Psychiatry. 2008; 79: 6–11
   PubMed Web of Science ®Google Scholar
• Cudkowicz M, Shefner J, Schoenfeld D, Zhang H, Andreasson K, Rothstein J, et al. Trial of celecoxib in amyotrophic lateral sclerosis. Annals of Neurology. 2006; 60: 22–31
   PubMed Web of Science ®Google Scholar
• Cudkowicz ME, Shefner JM, Schoenfeld DA, Brown RH, Jr, Johnson H, Qureshi M, et al. A randomized, placebo-controlled trial of topiramate in amyotrophic lateral sclerosis. Neurology. 2003; 61: 456–64
   PubMed Web of Science ®Google Scholar
• Shefner JM, Cudkowicz ME, Schoenfeld D, Conrad T, Taft J, Chilton M, et al. NEALS. A clinical trial of creatine in amyotrophic lateral sclerosis. Neurology. 2004; 63: 1656–61
   PubMed Web of Science ®Google Scholar
• Diggle, P, Heagerty, P, Liang, K, Zeger, S. Analysis of longitudinal data2nd edn. Oxford University Press; 2002.
   Google Scholar
• Sorenson EJ, Stalker AP, Kurland LT, Windebank AJ. Amyotrophic lateral sclerosis in Olmsted County, Minnesota, 1925–1998. Neurology. 2002; 59: 280–2
   PubMed Web of Science ®Google Scholar
• Forbes R, Colville S, Cran G, Swingler R. Unexpected decline in survival from amyotrophic lateral sclerosis/motor neuron disease. J Neurol Neurosurg Psychiatry. 2004; 75: 1753–5
   PubMed Web of Science ®Google Scholar
• Czaplinski A, Haverkamp LJ, Yen AA, Simpson EP, Lai EC, Appel SH. The value of database controls in pilot or futility studies in ALS. Neurology. 2006; 67: 1827–32
   PubMed Web of Science ®Google Scholar
• Traynor BJ, Zhang H, Shefner JM, Schoenfeld D, Cudkowicz ME. Functional outcome measures as clinical trial endpoints in ALS. Neurology. 2004; 63: 1933–5
   PubMed Web of Science ®Google Scholar
• O'Toole O, Traynor B, Brennan P, Sheehan C, Frost E, Corr B, et al. Epidemiology and clinical features of amyotrophic lateral sclerosis in Ireland between 1995 and 2004. J Neurol Neurosurg Psychiatry. 2008; 79: 30–2
   PubMed Web of Science ®Google Scholar
• Miller R, Moore DH, Young L, Group WS. Placebo controlled trial of gabapentin in patients with amyotrophic lateral sclerosis. Neurology. 1996; 47: 1383–8
   PubMed Web of Science ®Google Scholar
• Miller R, Petajan J, Bryan W, Armon C, Barohn R, Goodpasture J, et al. A placebo controlled trial of recombinant human ciliary neurotrophic (rhCNTF) factor in amyotrophic lateral sclerosis. Ann Neurol. 1996; 39: 256–60
   PubMed Web of Science ®Google Scholar
• Miller R, Bradley W, Cudkowicz M, Hubble J, Meininger V, Mitsumoto H, et al. Phase II/III randomized trial of TCH346 in patients with ALS. Neurology. 2007; 69: 776–84
   PubMed Web of Science ®Google Scholar
• Group ACTS. A double-blind placebo-controlled clinical trial of subcutaneous recombinant human ciliary neurotrophic factor (rhCNTF) in amyotrophic lateral sclerosis. Neurol. 1996; 46: 1244–9
   PubMed Web of Science ®Google Scholar
• BDNF Study Group (Phase III). A controlled trial of recombinant methionyl human BDNF in ALS. Neurology. 1999;52:1427–33.
   PubMed Web of Science ®Google Scholar
• Miller RG, Moore DH, Gelinas DF, Dronsky B, Mendoza M, Barohn R, et al. Phase III randomized trial of gabapentin in patients with amyotrophic lateral sclerosis. Neurology. 2001; 56: 843–8
   PubMed Web of Science ®Google Scholar
• Gordon PH, Moore DH, Miller RG, Florence JM, Verheijde JL, Doorish C, et al. Efficacy of minocycline in patients with amyotrophic lateral sclerosis: a phase III randomized trial. The Lancet Neurology. 2007; 6: 1045–53
   PubMed Web of Science ®Google Scholar
• Bensimon G, Lacomblez L, Meininger V. A controlled trial of riluzole in amyotrophic lateral sclerosis. Amyotrophic Lateral Sclerosis/Riluzole Study Group. N Engl J Med. 1994; 330: 585–91
   PubMed Web of Science ®Google Scholar
• Groeneveld G, Veldink J, van der Tweel I, Kalmijn S, Beijer C, de Visser M, et al. A randomized sequential trial of creatine in amyotrophic lateral sclerosis. Ann Neurol. 2003; 53: 437–45
   PubMed Web of Science ®Google Scholar
• Meininger V, Asselain B, Guillet P, Leigh PN, Ludolph A, Lacomblez L, et al. Pentoxifylline in ALS: a double-blind, randomized, multicenter, placebo-controlled trial. Neurology. 2006; 66: 88–92
   PubMed Web of Science ®Google Scholar
• Sorenson EJ, Windbank AJ, Mandrekar JN, Bamlet WR, Appel SH, Armon C, et al. Subcutaneous IGF-1 is not beneficial in two-year ALS trial. Neurology. 2008; 71: 1770–5
   PubMed Web of Science ®Google Scholar
• Meininger V, Bensimon G, Bradley WG, Brooks BR, Douillet P, Eisen AA, et al. Efficacy and safety of xaliproden in amyotrophic lateral sclerosis: results of two phase III trials. Amyotroph Lateral Scler Other Motor Neuron Disord. 2004; 5: 107–17
   PubMed Web of Science ®Google Scholar
• Lai E, Felice K, Festoff B, Gawel M, Gelinas D, Kratz R, et al. Effect of recombinant human insulin-like growth factor-1 on progression of ALS: a placebo controlled study. The North America ALS/IGF-1 Study Group. Neurology. 1997; 49: 1621–30
   PubMed Web of Science ®Google Scholar
• Levin B, Thompson G, Mitsumoto LH, Kaufmann P, Meininger V, Asselain B, et al. Pentoxifylline in ALS: A double-blind, randomized, multicenter, placebo-controlled trial. Neurology. 2006; 66: 1786–7
   PubMed Web of Science ®Google Scholar