Guidance for clinical management of pathogenic variant carriers at elevated genetic risk for ALS/FTD

Michael Benatar; Terry D Heiman-Patterson; Johnathan Cooper-Knock; Daniel Brickman; Kaitlin B Casaletto; Stephen A Goutman; Marco Vinceti; Laynie Dratch; Jalayne J Arias; Jean Swidler; Martin R Turner; Jeremy Shefner; Henk-Jan Westeneng; Leonard H van den Berg; Ammar Al-Chalabi

doi:10.1136/jnnp-2024-334339

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Guidance for clinical management of pathogenic variant carriers at elevated genetic risk for ALS/FTD

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Michael Benatar Neurology, University of Miami Miller School of Medicine, Miami, Florida, USA PubMed articles Google scholar articles
Terry D Heiman-Patterson Department of Neurology, Lewis Katz School of Medicine at Temple University, Philadelphia, Pennsylvania, USA PubMed articles Google scholar articles
Johnathan Cooper-Knock Department of Neurology, The University of Sheffield SITraN, Sheffield, UK PubMed articles Google scholar articles
Daniel Brickman Genetic ALS & FTD: End the Legacy, Philadelphia, Pennsylvania, USA PubMed articles Google scholar articles
Kaitlin B Casaletto Department of Neurology, UCSF Memory and Aging Center, San Francisco, California, USA PubMed articles Google scholar articles
Stephen A Goutman Department of Neurology, University of Michigan, Ann Arbor, Michigan, USA PubMed articles Google scholar articles
Marco Vinceti Department of Biomedical, Metabolic and Neural Sciences, University of Modena and Reggio Emilia, Modena, Italy Department of Epidemiology, Boston University School of Public Health, Boston, Massachusetts, USA PubMed articles Google scholar articles
Laynie Dratch Department of Neurology, University of Pennsylvania Perelman School of Medicine, Philadelphia, Pennsylvania, USA PubMed articles Google scholar articles
Jalayne J Arias Department of Health Policy & Behavioral Sciences, Georgia State University School of Public Health, Atlanta, Georgia, USA PubMed articles Google scholar articles
Jean Swidler Genetic ALS & FTD: End the Legacy, Philadelphia, Pennsylvania, USA PubMed articles Google scholar articles
Martin R Turner Nuffield Department of Clinical Neurosciences, Oxford University, Oxford, UK PubMed articles Google scholar articles
Jeremy Shefner Department of Neurology, Barrow Neurological Institute, Phoenix, Arizona, USA PubMed articles Google scholar articles
Henk-Jan Westeneng Department of Neurology, UMC Utrecht Brain Center Rudolf Magnus, Utrecht, The Netherlands PubMed articles Google scholar articles
Leonard H van den Berg Department of Neurology, University Medical Centre Utrecht Brain Centre, Utrecht, The Netherlands PubMed articles Google scholar articles
Ammar Al-Chalabi Department of Basic and Clinical Neuroscience, King's College London, London, UK PubMed articles Google scholar articles
Attendees of the Workshop on Guidance for Clinical Care of People Living with a Pathogenic Variant At-Risk for ALS and FTD
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Correspondence to Dr Michael Benatar; MBenatar{at}med.miami.edu

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Benatar M, Heiman-Patterson TD, Cooper-Knock J Attendees of the Workshop on Guidance for Clinical Care of People Living with a Pathogenic Variant At-Risk for ALS and FTD, et al

Guidance for clinical management of pathogenic variant carriers at elevated genetic risk for ALS/FTD

Journal of Neurology, Neurosurgery & Psychiatry 2025;96:209-218.

Publication history

Received May 29, 2024
Accepted August 19, 2024
First published November 21, 2024.

Online issue publication

March 13, 2025

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© Author(s) (or their employer(s)) 2025. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ Group. http://creativecommons.org/licenses/by-nc/4.0/This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

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