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Original Articles

Clinical audit research and evaluation of motor neuron disease (CARE-MND): a national electronic platform for prospective, longitudinal monitoring of MND in Scotland

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Pages 242-250 | Received 24 Dec 2018, Accepted 10 Feb 2019, Published online: 20 Mar 2019

References

  • National Records of Scotland. Statistics and data: mid-year population estimates [Internet]. National Records of Scotland. 2017. [cited 2018 Feb 28]. Available at: https://www.nrscotland.gov.uk/statistics-and-data/statistics/statistics-by-theme/population/population-estimates/mid-year-population-estimates.
  • Alonso A, Logroscino G, Jick SS, Hernán MA. Incidence and lifetime risk of motor neuron disease in the United Kingdom: a population-based study. Eur J Neurol. 2009;16:745–51.
  • Black HA, Leighton DJ, Cleary EM, Rose E, Stephenson L, Colville S, et al. Genetic epidemiology of motor neuron disease-associated variants in the Scottish population. Neurobiol Aging. 2017;51:178.e11–178.e20.
  • The Scottish Motor Neuron Disease Research Group. The Scottish motor neuron disease register: a prospective study of adult onset motor neuron disease in Scotland. Methodology, demography and clinical features of incident cases in 1989. J Neurol Neurosurg Psychiatry. 1992;55:536–41.
  • Forbes RB, Colville S, Parratt J, Swingler RJ. The incidence of motor neuron disease in Scotland. J Neurol. 2007;254:866–9.
  • Davenport RJ, Swingler RJ, Chancellor AM, Warlow CP. Avoiding false positive diagnoses of motor neuron disease: lessons from the Scottish motor neuron disease register. J Neurol Neurosurg Psychiatry. 1996;60:147–51.
  • Forbes RB, Colville S, Swingler RJ. Scottish ALS/MND register. The epidemiology of amyotrophic lateral sclerosis (ALS/MND) in people aged 80 or over. Age Ageing. 2004;33:131–4.
  • Chancellor AM, Slattery JM, Fraser H, Swingler RJ, Holloway SM, Warlow CP. The prognosis of adult-onset motor neuron disease: a prospective study based on the Scottish motor neuron disease register. J Neurol. 1993;240:339–46.
  • Quality Improvement Scotland. Neurological Health Services: Clinical Standards October 2009 [Internet]. 2009. Available at: http://www.scottishneurological.org.uk/content/res/final_qis_standards.pdf. Accessed February 6, 2018.
  • Health Improvement Scotland. Neurological health services in Scotland: Final Report [Internet]. 2012. Available at: http://www.healthcareimprovementscotland.org/our_work/long_term_conditions/neurological_health_services/neuro_services_national_report.aspx. Accessed February 6, 2018.
  • Swingler R. An audit of the health of people with motor neurone disease in Scotland: the Scottish motor neurone disease audit, research and trials (SMART) study. Unpublished. 2015.
  • Ferrie J, Robertson PR, Watson N. Living with MND: an evaluation of care pathways available to adults with, and the families or carers of, adults with motor neurone disease in Scotland [Internet]. 2013. Available at: https://www.euanmacdonaldcentre.com/wp-content/uploads/2015/02/Living-with-MND_Jo-Ferrie_report.pdf. Accessed March 1, 2015
  • Hardiman O, Al-Chalabi A, Brayne C, Beghi E, Van Den Berg LH, Chio A, et al. The changing picture of amyotrophic lateral sclerosis: lessons from European registers. J Neurol Neurosurg Psychiatry. 2017;88:557–63.
  • Edgren G, Hjalgrim H, Rostgaard K, Lambert P, Wikman A, Norda R, et al. Transmission of neurodegenerative disorders through blood transfusion. Ann Intern Med. 2016;165:316.
  • Zheng Z, Sheng L, Shang H. Statins and amyotrophic lateral sclerosis: a systematic review and meta-analysis. Amyotroph Lateral Scler Front Degener. 2013;14:241–5.
  • Seelen M, van Doormaal PTC, Visser AE, Huisman MHB, Roozekrans MHJ, de Jong SW, et al. Prior medical conditions and the risk of amyotrophic lateral sclerosis. J Neurol. 2014;261:1949–56.
  • Belbasis L, Bellou V, Evangelou E. Environmental risk factors and amyotrophic lateral sclerosis: an umbrella review and critical assessment of current evidence from systematic reviews and meta-analyses of observational studies. Neuroepidemiology. 2016;46:96–105.
  • Malek AM, Barchowsky A, Bowser R, Youk A, Talbott EO. Pesticide exposure as a risk factor for amyotrophic lateral sclerosis: a meta-analysis of epidemiological studies: pesticide exposure as a risk factor for ALS. Environ Res. 2012;117:112–9.
  • Sutedja NA, Veldink JH, Fischer K, Kromhout H, Heederik D, Huisman MHB, et al. Exposure to chemicals and metals and risk of amyotrophic lateral sclerosis: a systematic review. Amyotroph Lateral Scler. 2009;10:302–9.
  • Ingre C, Roos PM, Piehl F, Kamel F, Fang F. Risk factors for amyotrophic lateral sclerosis. Clin Epidemiol. 2015;7:181–93.
  • Alonso A, Logroscino G, Hernan MA. Smoking and the risk of amyotrophic lateral sclerosis: a systematic review and meta-analysis. J Neurol Neurosurg Psychiatry. 2010;81:1249–52.
  • Gallo V, Bueno-De-Mesquita HB, Vermeulen R, Andersen PM, Kyrozis A, Linseisen J, et al. Smoking and risk for amyotrophic lateral sclerosis: analysis of the EPIC cohort. Ann Neurol. 2009;65:378–85.
  • Gallo V, Vanacore N, Bueno-de-Mesquita HB, Vermeulen R, Brayne C, Pearce N, et al. Physical activity and risk of amyotrophic lateral sclerosis in a prospective cohort study. Eur J Epidemiol. 2016;31:255–66.
  • Cedarbaum JM, Stambler N, Malta E, Fuller C, Hilt D, Thurmond B, et al. The ALSFRS-R: a revised ALS functional rating scale that incorporates assessments of respiratory function. BDNF ALS study group (phase III). J Neurol Sci. 1999;169:13–21.
  • Johns MW. A new method for measuring daytime sleepiness: the Epworth sleepiness scale. Sleep. 1991;14:540–5.
  • Crockford C, Newton J, Lonergan K, Madden C, Mays I, O’Sullivan M, et al. Measuring reliable change in cognition using the Edinburgh cognitive and behavioural ALS screen (ECAS). Amyotroph Lateral Scler Front Degener. 2018;19:65–73.
  • Crockford C, Newton J, Lonergan K, Chiwera T, Booth T, Chandran S, et al. ALS-specific cognitive and behavior changes associated with advancing disease stage in ALS. Neurology. 2018;91:e1370–80.
  • Niven E, Newton J, Foley J, Colville S, Swingler R, Chandran S, et al. Validation of the Edinburgh cognitive and behavioural amyotrophic lateral sclerosis screen (ECAS): a cognitive tool for motor disorders. Amyotroph Lateral Scler Front Degener. 2015;16:172–9.
  • Abrahams S, Newton J, Niven E, Foley J, Bak TH. Screening for cognition and behaviour changes in ALS. Amyotroph Lateral Scler Frontotemporal Degener. 2014;15:9–14.
  • Turner MR. The reunification of amyotrophic lateral sclerosis. J Neurol Neurosurg Psychiatry. 2018;90:141–47.
  • Brooks BR. El Escorial world federation of neurology criteria for the diagnosis of amyotrophic lateral sclerosis. Subcommittee on motor neuron diseases/amyotrophic lateral sclerosis of the world federation of neurology research group on neuromuscular diseases and the El Escorial “clinical limits of amyotrophic lateral sclerosis” workshop contributors. J Neurol Sci. 1994;124:96–107.
  • Brooks BR, Miller RG, Swash M, Munsat TL. El Escorial revisited: revised criteria for the diagnosis of amyotrophic lateral sclerosis. Amyotroph Lateral Scler Other Motor Neuron Disord. 2000;1:293–9.
  • National Institute for Health and Care Guidance. Motor neurone disease: assessment and management | Guidance and guidelines | NICE [Internet]. NICE guideline. NICE. 2016. Available at: https://www.nice.org.uk/guidance/ng42. Accessed October 22, 2016
  • R Core Team. R: a language and environment for statistical computing. R foundation for statistical computing. Vienna, Austria: R Foundation for Statistical Computing; 2017.
  • Radakovic R, Stephenson L, Colville S, Swingler R, Chandran S, Abrahams S. Multidimensional apathy in ALS: validation of the dimensional apathy scale. J Neurol Neurosurg Psychiatry. 2016;87:663–9.
  • Henstridge CM, Sideris DI, Carroll E, Rotariu S, Salomonsson S, Tzioras M, et al. Synapse loss in the prefrontal cortex is associated with cognitive decline in amyotrophic lateral sclerosis. Acta Neuropathol. 2018;135:213–26.
  • McGeachan AJ, Hobson EV, Al-Chalabi A, Stephenson J, Chandran S, Crawley F, et al. A multicentre evaluation of oropharyngeal secretion management practices in amyotrophic lateral sclerosis. Amyotroph Lateral Scler Front Degener. 2017;18:1–9.
  • McLaughlin RL, Schijven D, van Rheenen W, van Eijk KR, O’Brien M, Kahn RS, et al. Genetic correlation between amyotrophic lateral sclerosis and schizophrenia. Nat Comms. 2017;8:14774.
  • van Rheenen W, Shatunov A, Dekker AM, McLaughlin RL, Diekstra FP, Pulit SL, et al. Genome-wide association analyses identify new risk variants and the genetic architecture of amyotrophic lateral sclerosis. Nat Genet. 2016;48:1043–8.
  • MND Scotland. Figures show “Aikman” impact on MND Care [Internet]. MND Scotland Website. 2018. Available at: https://www.mndscotland.org.uk/latest/news/figures-show-aikman-impact-on-mnd-care/. Accessed November 21, 2018.
  • Longinetti E, Regodón Wallin A, Samuelsson K, Press R, Zachau A, Ronnevi LO, et al. The Swedish motor neuron disease quality registry. Amyotroph Lateral Scler Front Degener. 2018;19:528–37.
  • Walker KL, Rodrigues MJ, Watson B, Reilly C, Scotter EL, Brunton H, et al. Establishment and 12-month progress of the New Zealand Motor Neurone Disease Registry. J Clin Neurosci. 2019;60:7–11.

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