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Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration Volume 25, 2024 - Issue 3-4
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Meeting Report

The ALSFRS-R Summit: a global call to action on the use of the ALSFRS-R in ALS clinical trials

Angela Genge1 Montreal Neurological Institute-Hospital, ALS Center of Excellence, Montreal, Quebec, CanadaCorrespondence[email protected]
View further author information
,
Jesse M. Cedarbaum2 Yale School of Medicine, Section of Movement Disorders, Coeruleus Clinical Sciences LLC, Woodbridge, CT, USAView further author information
,
Jeremy Shefner3 Barrow Neurological Institute, Phoenix, AZ, USAView further author information
,
Adriano Chio4 Department of Neuroscience, University of Turin, Torino, ItalyView further author information
,
Ammar Al-Chalabi5 Department of Basic and Clinical Neuroscience, King’s College London, Institute of Psychiatry Psychology and Neuroscience, Maurice Wohl Clinical Neuroscience Institute, London, UKView further author information
,
Philip Van Damme6 Department of Neurology, KU Leuven, Leuven, BelgiumView further author information
,
Chris McDermott7 Department of Neurology, The University of Sheffield, Sheffield, UKORCID Iconhttps://orcid.org/0000-0002-1269-9053View further author information
ORCID Icon,
Jonathan Glass8 Department of Neurology, Emory University, Atlanta, GA, USAView further author information
,
James Berry9 Massachusetts General Hospital, Neurology, Boston, MA, USAView further author information
,
Ruben P.A. van Eijk10 Department of Neurology and Biostatistics, UMC Utrecht Hersencentrum Rudolf Magnus, Utrecht, NetherlandsORCID Iconhttps://orcid.org/0000-0002-7132-5967View further author information
ORCID Icon,
Christina Fournier8 Department of Neurology, Emory University, Atlanta, GA, USAView further author information
,
Julian Grosskreutz11 Precision Neurology of Neuromuscular and Motoneuron Diseases, University of Lübeck, Lübeck, GermanyView further author information
,
Jinsy Andrews12 Columbia Presbyterian Medical Center, Neurology, New York, NY, USAView further author information
,
Vanessa Bertone13 Montreal Neurological Institute and Hospital, McGill University, Montreal, QC, CanadaView further author information
,
Tommy M Bunte14 Department of Neurology, UMC Utrecht Hersencentrum Rudolf Magnus, Utrecht, NetherlandsView further author information
,
Mathias Couillard13 Montreal Neurological Institute and Hospital, McGill University, Montreal, QC, CanadaView further author information
,
Cathy Cummings15 International Alliance of ALS/MND Associations, Northampton, Northamptonshire, UK, andView further author information
,
Gale Kittle3 Barrow Neurological Institute, Phoenix, AZ, USAView further author information
,
John Polzer16 QurAlis, Cambridge, MA, USAView further author information
,
Kristiana Salmon16 QurAlis, Cambridge, MA, USAView further author information
,
Corey Straub16 QurAlis, Cambridge, MA, USAView further author information
&
Leonard H. van den Berg14 Department of Neurology, UMC Utrecht Hersencentrum Rudolf Magnus, Utrecht, NetherlandsView further author information
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Pages 382-387 | Received 14 Dec 2023, Accepted 12 Feb 2024, Published online: 23 Feb 2024

References

  • 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.
  • 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.
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  • Johnson SA, Burke KM, Scheier ZA, Keegan MA, Clark AP, Chan J, et al. Longitudinal comparison of the self-entry Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised (ALSFRS-RSE) and Rasch-Built overall Amyotrophic Lateral Sclerosis Disability Scale (ROADS) as outcome measures in people with amyotrophic lateral sclerosis. Muscle Nerve. 2022;66:495–502.
  • Fournier CN, Bedlack R, Quinn C, Russell J, Beckwith D, Kaminski KH, et al. Development and validation of the Rasch-Built overall Amyotrophic Lateral Sclerosis Disability Scale (ROADS). JAMA Neurol. 2020;77:480–8.
  • 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;25:102094.
  • Gaur N, Steinbach R, Plaas M, Witte OW, Brill MS, Grosskreutz J. Chitinase dysregulation predicts disease aggressiveness in ALS: Insights from the D50 progression model. J Neurol Neurosurg Psychiatry. 2023;94:585–8.
  • Genge A, Chio A. The future of ALS diagnosis and staging: where do we go from here? Amyotroph Lateral Scler Frontotemporal Degener. 2023;24:165–74.

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