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Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration Volume 20, 2019 - Issue 3-4
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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

Danielle LeightonCentre for Clinical Brain Sciences, University of Edinburgh, Edinburgh, UK, ;Euan MacDonald Centre for Motor Neurone Disease Research, University of Edinburgh, Edinburgh, UK, ;Department of Neurology, NHS Lothian, Western General Hospital, Edinburgh, UK, ;Department of Neurology, NHS Greater Glasgow & Clyde, Glasgow, UK, View further author information
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Judith NewtonCentre for Clinical Brain Sciences, University of Edinburgh, Edinburgh, UK, ;Euan MacDonald Centre for Motor Neurone Disease Research, University of Edinburgh, Edinburgh, UK, ;Department of Neurology, NHS Lothian, Western General Hospital, Edinburgh, UK, View further author information
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Shuna ColvilleCentre for Clinical Brain Sciences, University of Edinburgh, Edinburgh, UK, ;Euan MacDonald Centre for Motor Neurone Disease Research, University of Edinburgh, Edinburgh, UK, ;Department of Neurology, NHS Lothian, Western General Hospital, Edinburgh, UK, View further author information
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Andrew BethellDepartment of Neurology, NHS Highland, Inverness, UK, View further author information
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Gillian CraigDepartment of Neurology, NHS Tayside, Dundee, UK, View further author information
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Laura CunninghamDepartment of Neurology, NHS Greater Glasgow & Clyde, Glasgow, UK, ;Department of Neurology, NHS Lanarkshire, Glasgow, UK, View further author information
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Moira FlettDepartment of Neurology, NHS Orkney, Kirkwall, UK, View further author information
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Dianne FraserDepartment of Neurology, NHS Grampian, Aberdeen, UK, View further author information
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Janice HatrickDepartment of Neurology, NHS Greater Glasgow & Clyde, Glasgow, UK, View further author information
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Helen LennoxDepartment of Neurology, NHS Ayrshire & Arran, Ayr, UK, ;Department of Neurology, NHS Dumfries & Galloway, Dumfries, UK, View further author information
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Laura MarshallDepartment of Neurology, NHS Forth Valley, Stirling, UK, View further author information
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Dympna McAleerDepartment of Neurology, NHS Tayside, Dundee, UK, View further author information
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Alison McEleneyDepartment of Neurology, NHS Lothian, Western General Hospital, Edinburgh, UK, ;Department of Neurology, NHS Borders, Melrose, UK, View further author information
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Kitty MillarDepartment of Neurology, NHS Western Isles, Stornoway, UK, and View further author information
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Ann SilverDepartment of Neurology, NHS Greater Glasgow & Clyde, Glasgow, UK, ;Department of Neurology, NHS Lanarkshire, Glasgow, UK, View further author information
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Laura StephensonEuan MacDonald Centre for Motor Neurone Disease Research, University of Edinburgh, Edinburgh, UK, ;Department of Neurology, NHS Lothian, Western General Hospital, Edinburgh, UK, View further author information
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Susan StewartDepartment of Neurology, NHS Grampian, Aberdeen, UK, View further author information
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Dorothy StoreyDepartment of Neurology, NHS Shetland, Lerwick, UKView further author information
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Gill StottDepartment of Neurology, NHS Lothian, Western General Hospital, Edinburgh, UK, ;Department of Neurology, NHS Borders, Melrose, UK, View further author information
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Carol ThorntonDepartment of Neurology, NHS Grampian, Aberdeen, UK, View further author information
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Carolyn WebberDepartment of Neurology, NHS Tayside, Dundee, UK, View further author information
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Harry GordonCentre for Clinical Brain Sciences, University of Edinburgh, Edinburgh, UK, ;Euan MacDonald Centre for Motor Neurone Disease Research, University of Edinburgh, Edinburgh, UK, ;Department of Neurology, NHS Lothian, Western General Hospital, Edinburgh, UK, View further author information
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Giulia MelchiorreCentre for Clinical Brain Sciences, University of Edinburgh, Edinburgh, UK, ;Euan MacDonald Centre for Motor Neurone Disease Research, University of Edinburgh, Edinburgh, UK, ;Department of Neurology, NHS Lothian, Western General Hospital, Edinburgh, UK, View further author information
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Laura SherlockCentre for Clinical Brain Sciences, University of Edinburgh, Edinburgh, UK, ;Euan MacDonald Centre for Motor Neurone Disease Research, University of Edinburgh, Edinburgh, UK, View further author information
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Emily BeswickCentre for Clinical Brain Sciences, University of Edinburgh, Edinburgh, UK, ;Euan MacDonald Centre for Motor Neurone Disease Research, University of Edinburgh, Edinburgh, UK, View further author information
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David BuchananCentre for Clinical Brain Sciences, University of Edinburgh, Edinburgh, UK, ;Euan MacDonald Centre for Motor Neurone Disease Research, University of Edinburgh, Edinburgh, UK, View further author information
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Sharon AbrahamsCentre for Clinical Brain Sciences, University of Edinburgh, Edinburgh, UK, ;Euan MacDonald Centre for Motor Neurone Disease Research, University of Edinburgh, Edinburgh, UK, ;Department of Neurology, NHS Lothian, Western General Hospital, Edinburgh, UK, View further author information
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Anthony BatemanCentre for Clinical Brain Sciences, University of Edinburgh, Edinburgh, UK, ;Euan MacDonald Centre for Motor Neurone Disease Research, University of Edinburgh, Edinburgh, UK, ;Department of Neurology, NHS Lothian, Western General Hospital, Edinburgh, UK, View further author information
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Jenny PrestonDepartment of Neurology, NHS Ayrshire & Arran, Ayr, UK, View further author information
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Callum DuncanDepartment of Neurology, NHS Grampian, Aberdeen, UK, View further author information
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Richard DavenportCentre for Clinical Brain Sciences, University of Edinburgh, Edinburgh, UK, ;Euan MacDonald Centre for Motor Neurone Disease Research, University of Edinburgh, Edinburgh, UK, ;Department of Neurology, NHS Lothian, Western General Hospital, Edinburgh, UK, View further author information
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George GorrieEuan MacDonald Centre for Motor Neurone Disease Research, University of Edinburgh, Edinburgh, UK, ;Department of Neurology, NHS Greater Glasgow & Clyde, Glasgow, UK, View further author information
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Ian MorrisonDepartment of Neurology, NHS Tayside, Dundee, UK, View further author information
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Robert SwinglerCentre for Clinical Brain Sciences, University of Edinburgh, Edinburgh, UK, ;Euan MacDonald Centre for Motor Neurone Disease Research, University of Edinburgh, Edinburgh, UK, View further author information
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Siddharthan ChandranCentre for Clinical Brain Sciences, University of Edinburgh, Edinburgh, UK, ;Euan MacDonald Centre for Motor Neurone Disease Research, University of Edinburgh, Edinburgh, UK, ;Department of Neurology, NHS Lothian, Western General Hospital, Edinburgh, UK, View further author information
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Suvankar PalCentre for Clinical Brain Sciences, University of Edinburgh, Edinburgh, UK, ;Euan MacDonald Centre for Motor Neurone Disease Research, University of Edinburgh, Edinburgh, UK, ;Department of Neurology, NHS Lothian, Western General Hospital, Edinburgh, UK, ;Department of Neurology, NHS Forth Valley, Stirling, UK, View further author information
 show all
Pages 242-250 | Received 24 Dec 2018, Accepted 10 Feb 2019, Published online: 20 Mar 2019

Citations (12)

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Read on this site (1)

Maria Stavrou, Judith Newton, Gill Stott, Shuna Colville, Siddharthan Chandran, Sharon Abrahams, Suvankar Pal & Richard Davenport. (2020) National audit of cognitive assessment in people with pwMND A national audit of cognitive assessment in people with motor neurone disease (pwMND) in Scotland. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration 21:5-6, pages 459-462.
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Articles from other publishers (11)

Olivia M Rifai, Judi O’Shaughnessy, Owen R Dando, Alison F Munro, Michael D E Sewell, Sharon Abrahams, Fergal M Waldron, Christopher R Sibley & Jenna M Gregory. (2023) Distinct neuroinflammatory signatures exist across genetic and sporadic amyotrophic lateral sclerosis cohorts. Brain 146:12, pages 5124-5138.
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Poulomi Banerjee, Arpan R. Mehta, Raja S. Nirujogi, James Cooper, Owen G. James, Jyoti Nanda, James LongdenKaren BurrKarina McDadeAndrea SalzingerEvdokia Paza, Judith Newton, David StorySuvankar PalColin SmithDario R. Alessi, Bhuvaneish T. Selvaraj, Josef Priller & Siddharthan Chandran. (2023) Cell-autonomous immune dysfunction driven by disrupted autophagy in C9orf72 -ALS iPSC-derived microglia contributes to neurodegeneration . Science Advances 9:16.
Crossref
Danielle J. Leighton, Morad Ansari, Judith Newton, David Parry, Elaine Cleary, Shuna Colville, Laura Stephenson, Juan Larraz, Micheala Johnson, Emily Beswick, Michael Wong, Jenna Gregory, Javier Carod Artal, Richard Davenport, Callum Duncan, Ian Morrison, Colin Smith, Robert Swingler, Ian J. Deary, Mary Porteous, Timothy J. Aitman, Siddharthan Chandran, George H. Gorrie, Suvankar Pal, Sarah Harris, James Prendergast, Tom Russ, Adele Taylor, Ian Deary, Andrew Bethell, Suzanne Byrne, Gillian Craig, Moira Flett, Hanne Haagendrud, Katarzyna Hafezi, Janice Hatrick, Aidan Hutchison, Helen Lennox, Laura Marshall, Dympna McAleer, Alison McEleney, Kitty Millar, Louise Murrie, David Perry, Gowri Saravanan, Martin Starrs, Susan Stewart, Dorothy Storey, Gill Stott, David Thompson, Carol Thornton, Tanya Van Der Westhuizen & Carolyn Webber. (2022) Genotype–phenotype characterisation of long survivors with motor neuron disease in Scotland. Journal of Neurology 270:3, pages 1702-1712.
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Olivia M Rifai, James Longden, Judi O'Shaughnessy, Michael DE Sewell, Judith Pate, Karina McDade, Michael JD Daniels, Sharon Abrahams, Siddharthan Chandran, Barry W McColl, Christopher R Sibley & Jenna M Gregory. (2022) Random forest modelling demonstrates microglial and protein misfolding features to be key phenotypic markers in C9orf72 ‐ALS . The Journal of Pathology 258:4, pages 366-381.
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Charis Wong, Maria Stavrou, Elizabeth Elliott, Jenna M Gregory, Nigel Leigh, Ashwin A Pinto, Timothy L Williams, Jeremy Chataway, Robert Swingler, Mahesh K B Parmar, Nigel Stallard, Christopher J Weir, Richard A Parker, Amina Chaouch, Hisham Hamdalla, John Ealing, George Gorrie, Ian Morrison, Callum Duncan, Peter Connelly, Francisco Javier Carod-Artal, Richard Davenport, Pablo Garcia Reitboeck, Aleksandar Radunovic, Venkataramanan Srinivasan, Jenny Preston, Arpan R Mehta, Danielle Leighton, Stella Glasmacher, Emily Beswick, Jill Williamson, Amy Stenson, Christine Weaver, Judith Newton, Dawn Lyle, Rachel Dakin, Malcolm Macleod, Suvankar Pal & Siddharthan Chandran. (2021) Clinical trials in amyotrophic lateral sclerosis: a systematic review and perspective. Brain Communications 3:4.
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Stella A. Glasmacher, Patrick K. A. Kearns, Juan Larraz, Lucy Stirland, Arpan R. Mehta, Judith Newton, Christopher J. Weir, Siddharthan Chandran, Suvankar Pal, Richard Davenport, David Thomson, Louise Murrie, Jennifer Preston, Govind Chavada, Robert J. Swingler, Danielle Leighton, Ian Morrison, George Gorrie, Callum Duncan, Myles Connor, David Simpson, Ondrej Dolezal, Katja Lassak, Antonella Benvenga, Javier Carod Artal, Andrew Bethell, Gillian Craig, Laura Cunningham, Moira Flett, Janice Hatrick, Helen Lennox, Laura Marshall, Alison McEleney, Kitty Millar, Suzanne Byrne, Susan Stewart, Dorothy Storey, Gowri Saravanan, Gill Stott & Carolyn Webber. (2021) Prevalence of multimorbidity and its impact on survival in people with motor neuron disease. European Journal of Neurology 28:8, pages 2756-2765.
Crossref
Stella A. Glasmacher, Juan Larraz, Arpan R. Mehta, Patrick K. A. Kearns, Michael Wong, Judith Newton, Richard Davenport, George Gorrie, Ian Morrison, Javier Carod Artal, Siddharthan Chandran, Suvankar Pal, David Thomson, Louise Murrie, Jenny Preston, Govind Chavada, Robert Swingler, Danielle Leighton, Callum Duncan, Myles Connor, David Simpson, Ondrej Dolezal, Katja Lassak, Antonella Benvenga, Andrew Bethell, Gillian Craig, Laura Cunningham, Moira Flett, Janice Hatrick, Helen Lennox, Laura Marshall, Alison McEleney, Kitty Millar, Suzanne Byrne, Susan Stewart, Dorothy Storey, Gill Stott, Carol Thornton & Carolyn Webber. (2020) The immediate impact of the COVID-19 pandemic on motor neuron disease services and mortality in Scotland. Journal of Neurology 268:6, pages 2038-2040.
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Emily Beswick, Stella A Glasmacher, Rachel Dakin, Judith Newton, Alan Carson, Sharon Abrahams, Siddharthan Chandran & Suvankar Pal. (2021) Prospective observational cohort study of factors influencing trial participation in people with motor neuron disease (FIT-participation-MND): a protocol. BMJ Open 11:3, pages e044996.
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Arpan R. Mehta, Jenna M. Gregory, Owen Dando, Roderick N. Carter, Karen Burr, Jyoti Nanda, David Story, Karina McDade, Colin Smith, Nicholas M. Morton, Don J. Mahad, Giles E. Hardingham, Siddharthan Chandran & Bhuvaneish T. Selvaraj. (2021) Mitochondrial bioenergetic deficits in C9orf72 amyotrophic lateral sclerosis motor neurons cause dysfunctional axonal homeostasis. Acta Neuropathologica 141:2, pages 257-279.
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Kiran Jayaprakash, Stella A. Glasmacher, Bernard Pang, Emily Beswick, Arpan R. Mehta, Rachel Dakin, Judith Newton, Siddharthan Chandran & Suvankar Pal. (2020) Riluzole prescribing, uptake and treatment discontinuation in people with amyotrophic lateral sclerosis in Scotland. Journal of Neurology 267:8, pages 2459-2461.
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Arpan R Mehta, Bhuvaneish T Selvaraj, Samantha K Barton, Karina McDade, Sharon Abrahams, Siddharthan Chandran, Colin Smith & Jenna M Gregory. (2020) Improved detection of RNA foci in C9orf72 amyotrophic lateral sclerosis post-mortem tissue using BaseScope™ shows a lack of association with cognitive dysfunction. Brain Communications 2:1.
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