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Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration Volume 24, 2023 - Issue 5-6
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Multicentered Studies

PRECISION ALS—an integrated pan European patient data platform for ALS

Robert McFarlane1 Academic Unit of Neurology, Trinity College Dublin, TRICALS Consortium, Dublin, Ireland;2 ADAPT Centre Trinity College Dublin, Dublin, IrelandView further author information
,
Miriam Galvin1 Academic Unit of Neurology, Trinity College Dublin, TRICALS Consortium, Dublin, Ireland;2 ADAPT Centre Trinity College Dublin, Dublin, IrelandView further author information
,
Mark Heverin1 Academic Unit of Neurology, Trinity College Dublin, TRICALS Consortium, Dublin, Ireland;2 ADAPT Centre Trinity College Dublin, Dublin, IrelandView further author information
,
Éanna Mac Domhnaill1 Academic Unit of Neurology, Trinity College Dublin, TRICALS Consortium, Dublin, Ireland;2 ADAPT Centre Trinity College Dublin, Dublin, IrelandView further author information
,
Deirdre Murray1 Academic Unit of Neurology, Trinity College Dublin, TRICALS Consortium, Dublin, Ireland;2 ADAPT Centre Trinity College Dublin, Dublin, IrelandView further author information
,
Dara Meldrum1 Academic Unit of Neurology, Trinity College Dublin, TRICALS Consortium, Dublin, Ireland;2 ADAPT Centre Trinity College Dublin, Dublin, IrelandView further author information
,
Peter Bede1 Academic Unit of Neurology, Trinity College Dublin, TRICALS Consortium, Dublin, Ireland;2 ADAPT Centre Trinity College Dublin, Dublin, IrelandView further author information
,
Anthony Bolger2 ADAPT Centre Trinity College Dublin, Dublin, IrelandView further author information
,
Lucy Hederman2 ADAPT Centre Trinity College Dublin, Dublin, IrelandView further author information
,
Sinéad Impey2 ADAPT Centre Trinity College Dublin, Dublin, IrelandView further author information
,
Gaye Stephens2 ADAPT Centre Trinity College Dublin, Dublin, IrelandView further author information
,
Ciara O’Meara2 ADAPT Centre Trinity College Dublin, Dublin, IrelandView further author information
,
Vincent Wade2 ADAPT Centre Trinity College Dublin, Dublin, IrelandView further author information
,
Ammar Al-Chalabi3 Kings College London, TRICALS Consortium, Dublin, IrelandView further author information
,
Adriano Chiò4 University of Torino, TRICALS Consortium, Turin, ItalyView further author information
,
Phillippe Corcia5 University of Tours, TRICALS Consortium, Tours, FranceView further author information
,
Philip van Damme6 Catholic University Leuven, TRICALS Consortium, Leuven, BelgiumView further author information
,
Caroline Ingre7 Karolinska University, TRICALS Consortium, Stockholm, SwedenView further author information
,
Christopher McDermott8 Sheffield University United Kingdom, Sheffield, UKORCID Iconhttps://orcid.org/0000-0002-1269-9053View further author information
ORCID Icon,
Monica Povedanos9 University of Barcelona, TRICALS Consortium, Barcelona, SpainView further author information
,
Leonard van den Berg10 University Medical Centre, Utrecht, TRICALS Consortium, Utrecht, The Netherlands, andView further author information
&
Orla Hardiman1 Academic Unit of Neurology, Trinity College Dublin, TRICALS Consortium, Dublin, Ireland;2 ADAPT Centre Trinity College Dublin, Dublin, Ireland;11 FutureNeuro Research Centre Trinity College Dublin, Dublin, IrelandCorrespondence[email protected]
View further author information
 show all
Pages 389-393 | Received 24 Mar 2023, Accepted 15 May 2023, Published online: 23 May 2023

References

  • Hardiman O, Van Den Berg LH, Kiernan MC. Clinical diagnosis and management of amyotrophic lateral sclerosis. Nat Rev Neurol. 2011;7:639–49.
  • Ryan M, Heverin M, Doherty MA, Davis N, Corr EM, Vajda A, et al. Determining the incidence of familiality in ALS: a study of temporal trends in Ireland from 1994 to 2016. Neurol Genet. 2018;4:e239.
  • Johnston CA, Stanton BR, Turner MR, Gray R, Blunt AH, Butt D, et al. Amyotrophic lateral sclerosis in an urban setting: a population-based study of inner city London. J Neurol. 2006;253:1642–3.
  • Olesen J, Gustavsson A, Svensson M, Wittchen HU, Jönsson B, Group CS, et al. The economic cost of brain disorders in Europe. Eur J Neurol. 2012;19:155–62.
  • O 'Brien M, Burke T, Heverin M, Vajda A, McLaughlin R, Gibbons J, et al. Clustering of neuropsychiatric disease in first-degree and second-degree relatives of patients with amyotrophic lateral sclerosis. JAMA Neurol. 2017;74:1425–30.
  • Goutman SA, Hardiman O, Al-Chalabi A, Chio A, Savelieff MG, Kiernan MC, et al. Emerging insights into the complex genetics and pathophysiology of amyotrophic lateral sclerosis. Lancet Neurol. 2022;21:465–79.
  • Mead RJ, Shan N, Reiser HJ, Marshall F, Shaw PJ. Amyotrophic lateral sclerosis: a neurodegenerative disorder poised for successful therapeutic translation. Nat Rev Drug Discov. 2023;22:185–212.
  • Bendotti C, Bonetto V, Pupillo E, Logroscino G, Al-Chalabi A, Lunetta C, et al. Focus on the heterogeneity of amyotrophic lateral sclerosis. Amyotroph Lateral Scler Frontotemporal Degener. 2020;21:485–95.
  • Hardiman O, Al-Chalabi A, Chio A, Corr EM, Logroscino G, Robberecht W, et al. Amyotrophic lateral sclerosis. Nat Rev Dis Primers. 2017;3:17085.
  • van Eijk RPA, Kliest T, McDermott CJ, Roes KCB, Van Damme P, Chio A, et al. TRICALS: creating a highway toward a cure. Amyotroph Lateral Scler Frontotemporal Degener. 2020; Nov21:496–501.

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