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Case Reports
. 2024 Nov 24:24:101819.
doi: 10.1016/j.bonr.2024.101819. eCollection 2025 Mar.

Impact of stopping burosumab treatment at the end of skeletal growth in adolescents with X-linked hypophosphatemia (XLH)

Charlotte Jarvis  1 , Renuka Ramakrishnan  1 , Poonam Dharmaraj  1 , Talat Mushtaq  2 , Sanjay Gupta  3 , Angela Williams  4 , Angela J Rylands  4 , Helen Barham  5 , Annabel Nixon  5 , Suma Uday  6
Affiliations
Case Reports

Impact of stopping burosumab treatment at the end of skeletal growth in adolescents with X-linked hypophosphatemia (XLH)

Charlotte Jarvis et al. Bone Rep. .

Abstract

Many adolescents with X-linked hypophosphatemia (XLH) currently have to stop treatment with burosumab at the end of skeletal growth. We describe the experience of a cohort of adolescents with XLH before, during, and after stopping burosumab (median treatment duration 37.5 months). Improvements in serum phosphate, pain, mobility, function, and quality of life noted during burosumab treatment were reversed after treatment cessation. Further real-world data are needed to explore the value of uninterrupted burosumab treatment in adolescents.

Keywords: Burosumab; Case series; X-linked hypophosphatemia.

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Conflict of interest statement

CJ has received consulting fees from Kyowa Kirin, and support for attending meetings and/or travel from Kyowa Kirin and Inozyme. RR has received support for the present manuscript and payment or honoraria from Merck and Kyowa Kirin. PD has received payment for an educational event as an invited speaker, and support for attending meetings and/or travel from Kyowa Kirin. TM has received consulting fees and payment or honoraria from Novo Nordisk and Kyowa Kirin, support for attending meetings from Novo Nordisk and Pfizer, and is Secretary of the British pediatric and Adolescent Bone Group and Chair Elect of the British Society for pediatric Endocrinology and Diabetes. SG has received support for meeting attendance from Kyowa Kirin. AR and AW are employed by Kyowa Kirin. AN and HB undertake work for Chilli Consultancy; the company has received payment from Kyowa Kirin to support the development of this manuscript. SU has received a speaker fee and travel grant from Kyowa Kirin, is an advisory board member for Kyowa Kirin, and is an expert panel member for the International Hypophosphataemia Network.

References

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