Dietetic management of adults with Classical Galactosaemia in the UK: A care consensus document
Robertson, Louise Tapley, Simon Sparks, Alexa McDonald, Joy Condie, Ellen Bailey, Sarah
Robertson, Louise
Tapley, Simon
Sparks, Alexa
McDonald, Joy
Condie, Ellen
Bailey, Sarah
Affiliation
University Hospitals Birmingham NHS Foundation Trust; Galactosaemia Support Group UK; University Hospitals of Bristol and Weston NHS Foundation Trust; The Newcastle Upon Tyne Hospitals NHS Foundation Trust; Belfast Health and Social Care Trust; University College London Hospitals NHS Foundation Trust; Cardiff and Vale University Health Board
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Publication date
2025-11-14
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Abstract
Classical Galactosaemia is a rare, inherited metabolic disorder requiring lifelong dietary management. Despite increasing numbers of adults living with this condition, there is currently no formalised training or standardised guidance for United Kingdom (UK) dietitians managing adult patients. In response to this gap, a group of experienced UK dietitians specialising in inherited metabolic disorders collaboratively developed the first UK consensus document for the dietetic management of adults with Classical Galactosaemia. The guidance was formulated over a 12-month period through structured virtual meetings, with the objective of promoting consistency in clinical practice, supporting equitable service provision, and enhancing patient outcomes. Key areas addressed include dietary interventions, nutritional adequacy, bone health, dietary management with cognitive impairment, and reproductive health. The document also highlights critical gaps in the evidence base, particularly regarding individual galactose tolerance, the identification of sensitive biomarkers for monitoring, and the potential for dietary liberalisation in adulthood. This consensus guidance serves as a foundational resource for clinical practice and professional development, aiming to improve the quality and consistency of dietetic care for adults with Classical Galactosaemia across the UK.
Citation
Robertson L, Tapley S, Sparks A, McDonald J, Condie E, Bailey S. Dietetic management of adults with Classical Galactosaemia in the UK: A care consensus document. Mol Genet Metab Rep. 2025 Nov 14;45:101277. doi: 10.1016/j.ymgmr.2025.101277.
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Article