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Lookup NU author(s): Dr Michael Wright
This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License (CC BY-NC 4.0).
© Author(s) (or their employer(s)) 2026. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ Group.Background Achondroplasia (ACH), the most common skeletal dysplasia, arises from gain-of-function variants in the fibroblast growth factor receptor 3 gene. Children with ACH experience lifelong medical, functional and psychosocial challenges requiring coordinated and anticipatory care. Although international guidance exists, the UK lacks national clinical care recommendations specific to its healthcare systems. Objective To develop UK-specific, multidisciplinary clinical recommendations for the care of children and young people (CYP) with ACH. Methods The UK Achondroplasia Network developed guidance in stages: stakeholder mapping of the care pathway, integration of contemporary literature with clinical expertise to draft age-specific guidance and Delphi statements, and a modified Delphi process with 25 multidisciplinary experts. The Delphi process involved two voting rounds and an in-person meeting, with consensus defined as ≥80% agreement. Results In the first Delphi round, all 20 statements achieved consensus; nine achieved 100% agreement. To strengthen consensus, after meeting in person, 17 statements were refined (four were divided into two statements), one created and one removed, resulting in 24 statements for Round 2; all achieved consensus, with 21 reaching 100% agreement. The guidance outlines age-specific monitoring and referral from infancy to adolescence. Recommendations address medical management of complications, psychosocial support, educational planning and transfer to adult care. Conclusion These are the first UK-specific multidisciplinary recommendations for the care of CYP with ACH. Aligned with international best practices and tailored to UK healthcare systems, they support anticipatory care, promote independence and enhance health and psychosocial outcomes. The guidelines offer a foundation for service planning, standardisation and equitable care.
Author(s): Candler TP, Ali K, Bewick E, Borg SA, Chinoy A, Cobourne MT, Cocca A, Freeman A, Gibbins J, Gosnell E, Harrison M, Johnson K, Latimer M, McDevitt H, Murch O, Nadar R, Offiah AC, Parks C, Skae M, Smithson SF, Tucker I, Turcu S, Webb EA, Wright M, Cheung MS
Publication type: Article
Publication status: Published
Journal: Archives of Disease in Childhood
Year: 2026
Pages: epub ahead of print
Online publication date: 21/01/2026
Acceptance date: 26/12/2025
Date deposited: 03/02/2026
ISSN (print): 0003-9888
ISSN (electronic): 1468-2044
Publisher: BMJ Publishing Group
URL: https://doi.org/10.1136/archdischild-2025-329829
DOI: 10.1136/archdischild-2025-329829
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