Exploring the needs and preferences of people with amyotrophic lateral sclerosis (ALS) when making genomic testing decisions: an interview study

Howard, J. orcid.org/0000-0001-7182-593X, Bekker, H.L. orcid.org/0000-0003-1978-5795, McDermott, C.J. orcid.org/0000-0002-1269-9053 et al. (1 more author) (2025) Exploring the needs and preferences of people with amyotrophic lateral sclerosis (ALS) when making genomic testing decisions: an interview study. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration. ISSN 2167-8421

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Item Type: Article
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© 2025 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group. This is an Open Access article distributed under the terms of the Creative Commons Attribution-NonCommercial-NoDerivatives License (http://creativecommons.org/licenses/by-nc-nd/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is properly cited, and is not altered, transformed, or built upon in any way. The terms on which this article has been published allow the posting of the Accepted Manuscript in a repository by the author(s) or with their consent.

Keywords: Genetic testing; amyotrophic lateral sclerosis; genomic testing; motor neuron disease; patient decision aids; shared decision-making; whole genome sequencing
Dates:
  • Published: 27 February 2025
  • Published (online): 27 February 2025
  • Accepted: 15 February 2025
  • Submitted: 20 December 2024
Institution: The University of Sheffield
Academic Units: The University of Sheffield > Faculty of Medicine, Dentistry and Health (Sheffield) > School of Medicine and Population Health
Funding Information:
Funder
Grant number
MOTOR NEURONE DISEASE ASSOCIATION
McNeill/Oct21/967-794
Depositing User: Symplectic Sheffield
Date Deposited: 14 Mar 2025 11:42
Last Modified: 14 Mar 2025 11:42
Status: Published online
Publisher: Informa UK Limited
Refereed: Yes
Identification Number: 10.1080/21678421.2025.2469727
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Sustainable Development Goals:
  • Sustainable Development Goals: Goal 3: Good Health and Well-Being
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