Howard, J., Bekker, H.L. orcid.org/0000-0003-1978-5795, Mcdermott, C.J. orcid.org/0000-0002-1269-9053 et al. (1 more author) (2024) A report of resources used by clinicians in the UK to support motor neuron disease genomic testing. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 25 (3-4). pp. 410-412. ISSN 2167-8421
Abstract
Genetic testing is a key decision-making point for people with motor neuron disease (MND); to establish eligibility for clinical trials, better understand the cause of their condition, and confirm the potential risk to relatives, who may be able to access predictive testing. Given the wide-reaching implications of MND genetic and predictive testing, it is essential that families are given adequate information, and that staff are provided with appropriate training. In this report we overview the information resources available to people with MND and family members around genetic testing, and the educational and training resources available to staff, based on information obtained through a freedom of information request to UK-based NHS Trusts. MND Association resources were most commonly used in information sharing, though we highlight distinctions between neurology and genetics centers. No respondents identified comprehensive training around MND genetic testing. We conclude with practice implications and priorities for the development of resources and training.
Metadata
Item Type: | Article |
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Authors/Creators: |
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Copyright, Publisher and Additional Information: | © 2024 The Author(s). This is an open access article under the terms of the Creative Commons Attribution-NonCommercial-NoDerivatives License (CC-BY-NC-ND 4.0). |
Keywords: | Genetics, training, patient information |
Dates: |
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Institution: | The University of Leeds |
Academic Units: | The University of Leeds > Faculty of Medicine and Health (Leeds) > School of Medicine (Leeds) > Leeds Institute of Health Sciences (Leeds) > Academic Unit of Psychiatry and Behavioural Sciences (Leeds) |
Funding Information: | Funder Grant number MOTOR NEURONE DISEASE ASSOCIATION Not Known |
Depositing User: | Symplectic Publications |
Date Deposited: | 16 Jan 2024 14:57 |
Last Modified: | 21 May 2024 12:36 |
Status: | Published |
Publisher: | Taylor and Francis |
Identification Number: | 10.1080/21678421.2023.2299204 |
Open Archives Initiative ID (OAI ID): | oai:eprints.whiterose.ac.uk:207627 |
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Licence: CC-BY-NC-ND 4.0