A holistic approach to fragile X syndrome integrated guidance for person‐centred care

Johnson, Kirsten, Stanfield, Andrew C., Scerif, Gaia, McKechanie, Andrew, Clarke, Angus ORCID: https://orcid.org/0000-0002-1200-9286, Herring, Jonathan, Smith, Kayla and Crawford, Hayley 2024. A holistic approach to fragile X syndrome integrated guidance for person‐centred care. Journal of Applied Research in Intellectual Disabilities 37 (3) , e13214. 10.1111/jar.13214

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Abstract

Background: The Fragile X community has expressed a desire for centralised, national guidelines in the form of integrated guidance for Fragile X Syndrome (FXS). Methods: This article draws on existing literature reviews, primary research and clinical trials on FXS, a Fragile X Society conference workshop and first‐hand experience of clinicians who have worked with those living with FXS over many years. Results: The article scopes proposed integrated guidance over the life course, including appendices of symptoms, comorbidities and referral options for FXS and Fragile X Premutation Associated Conditions. Conclusion: Integrated guidance would provide an authoritative source for doctors, health professionals, therapists, care workers, social workers, educators, employers, families and those living with FXS, so that a holistic, person‐centred approach can be taken across the United Kingdom to garner the best outcomes for those with FXS.

Item Type:	Article
Date Type:	Published Online
Status:	Published
Schools:	Medicine
Additional Information:	License information from Publisher: LICENSE 1: URL: http://creativecommons.org/licenses/by-nc/4.0/
Publisher:	Wiley
ISSN:	1360-2322
Date of First Compliant Deposit:	23 February 2024
Date of Acceptance:	1 February 2024
Last Modified:	23 Feb 2024 12:45
URI:	https://orca.cardiff.ac.uk/id/eprint/166514

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