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Adolescents' experience of living with X-linked hypophosphataemia (XLH): a mixed-methods analysis of those who continued and discontinued burosumab treatment after end of skeletal growth.

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Title: Adolescents' experience of living with X-linked hypophosphataemia (XLH): a mixed-methods analysis of those who continued and discontinued burosumab treatment after end of skeletal growth.
Authors: Saraff V; Birmingham Women's and Children's Hospital, Birmingham, UK. vrinda.saraff@nhs.net., Arango-Sancho P; Sant Joan de Déu Barcelona Hospital, Barcelona, Spain., Bacchetta J; Hospices Civils de Lyon, Lyon, France., Boot AM; University Medical Center Groningen, University of Groningen, Groningen, The Netherlands., Burren CP; University Hospitals Bristol and Weston NHS Foundation Trust, Bristol, UK., Chinoy A; Royal Manchester Children's Hospital, Manchester, UK., Dharmaraj P; Alder Hey Children's Hospital, Liverpool, UK., Gómez Llorente MA; Hospital Virgen de Las Nieves, Granada, Spain., González Rodríguez JD; Department of Pediatric Nephrology, Santa Lucia General University Hospital, Cartagena, Spain., Gueorguieva I; Centre Hospitalier Universitaire de Lille, Lille, France., Hayes W; Great Ormond Street Hospital, London, UK., Schnabel D; Center for Chronic Sick Children, Pediatric Endocrinology, Charité - University Medicine Berlin, Berlin, Germany., Duro HR; Pediatric Nephrology, Vall d'Hebron University Hospital, Barcelona, Spain., Davies EH; Aparito Ltd, a Wholly Owned Subsidiary of Eli Lilly &Co., Wrexham, UK., Komarzynski S; Aparito Ltd, a Wholly Owned Subsidiary of Eli Lilly &Co., Wrexham, UK., Rylands AJ; Kyowa Kirin International, Marlow, UK., Sandilands K; Kyowa Kirin International, Marlow, UK., Ishii H; Kyowa Kirin Co., Ltd., Tokyo, Japan., Williams A; Kyowa Kirin International, Marlow, UK., Selveindran S; Open Health Ltd, Marlow, UK., Barlassina A; Open Health Ltd, Marlow, UK., Bowden A; Spire Outcomes Limited, London, UK., Linglart A; Paris Saclay University, AP-HP, INSERM Bicêtre Paris Saclay Hospital, Le Kremlin Bicêtre, Paris, France.
Source: Orphanet journal of rare diseases [Orphanet J Rare Dis] 2026 Feb 03; Vol. 21 (1). Date of Electronic Publication: 2026 Feb 03.
Publication Type: Journal Article
Journal Info: Publisher: BioMed Central Country of Publication: England NLM ID: 101266602 Publication Model: Electronic Cited Medium: Internet ISSN: 1750-1172 (Electronic) Linking ISSN: 17501172 NLM ISO Abbreviation: Orphanet J Rare Dis Subsets: MEDLINE
Database: MEDLINE Ultimate
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  Data: Adolescents' experience of living with X-linked hypophosphataemia (XLH): a mixed-methods analysis of those who continued and discontinued burosumab treatment after end of skeletal growth.
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  Data: <searchLink fieldCode="AU" term="%22Saraff+V%22">Saraff V</searchLink>; Birmingham Women's and Children's Hospital, Birmingham, UK. vrinda.saraff@nhs.net.<br /><searchLink fieldCode="AU" term="%22Arango-Sancho+P%22">Arango-Sancho P</searchLink>; Sant Joan de Déu Barcelona Hospital, Barcelona, Spain.<br /><searchLink fieldCode="AU" term="%22Bacchetta+J%22">Bacchetta J</searchLink>; Hospices Civils de Lyon, Lyon, France.<br /><searchLink fieldCode="AU" term="%22Boot+AM%22">Boot AM</searchLink>; University Medical Center Groningen, University of Groningen, Groningen, The Netherlands.<br /><searchLink fieldCode="AU" term="%22Burren+CP%22">Burren CP</searchLink>; University Hospitals Bristol and Weston NHS Foundation Trust, Bristol, UK.<br /><searchLink fieldCode="AU" term="%22Chinoy+A%22">Chinoy A</searchLink>; Royal Manchester Children's Hospital, Manchester, UK.<br /><searchLink fieldCode="AU" term="%22Dharmaraj+P%22">Dharmaraj P</searchLink>; Alder Hey Children's Hospital, Liverpool, UK.<br /><searchLink fieldCode="AU" term="%22Gómez+Llorente+MA%22">Gómez Llorente MA</searchLink>; Hospital Virgen de Las Nieves, Granada, Spain.<br /><searchLink fieldCode="AU" term="%22González+Rodríguez+JD%22">González Rodríguez JD</searchLink>; Department of Pediatric Nephrology, Santa Lucia General University Hospital, Cartagena, Spain.<br /><searchLink fieldCode="AU" term="%22Gueorguieva+I%22">Gueorguieva I</searchLink>; Centre Hospitalier Universitaire de Lille, Lille, France.<br /><searchLink fieldCode="AU" term="%22Hayes+W%22">Hayes W</searchLink>; Great Ormond Street Hospital, London, UK.<br /><searchLink fieldCode="AU" term="%22Schnabel+D%22">Schnabel D</searchLink>; Center for Chronic Sick Children, Pediatric Endocrinology, Charité - University Medicine Berlin, Berlin, Germany.<br /><searchLink fieldCode="AU" term="%22Duro+HR%22">Duro HR</searchLink>; Pediatric Nephrology, Vall d'Hebron University Hospital, Barcelona, Spain.<br /><searchLink fieldCode="AU" term="%22Davies+EH%22">Davies EH</searchLink>; Aparito Ltd, a Wholly Owned Subsidiary of Eli Lilly &Co., Wrexham, UK.<br /><searchLink fieldCode="AU" term="%22Komarzynski+S%22">Komarzynski S</searchLink>; Aparito Ltd, a Wholly Owned Subsidiary of Eli Lilly &Co., Wrexham, UK.<br /><searchLink fieldCode="AU" term="%22Rylands+AJ%22">Rylands AJ</searchLink>; Kyowa Kirin International, Marlow, UK.<br /><searchLink fieldCode="AU" term="%22Sandilands+K%22">Sandilands K</searchLink>; Kyowa Kirin International, Marlow, UK.<br /><searchLink fieldCode="AU" term="%22Ishii+H%22">Ishii H</searchLink>; Kyowa Kirin Co., Ltd., Tokyo, Japan.<br /><searchLink fieldCode="AU" term="%22Williams+A%22">Williams A</searchLink>; Kyowa Kirin International, Marlow, UK.<br /><searchLink fieldCode="AU" term="%22Selveindran+S%22">Selveindran S</searchLink>; Open Health Ltd, Marlow, UK.<br /><searchLink fieldCode="AU" term="%22Barlassina+A%22">Barlassina A</searchLink>; Open Health Ltd, Marlow, UK.<br /><searchLink fieldCode="AU" term="%22Bowden+A%22">Bowden A</searchLink>; Spire Outcomes Limited, London, UK.<br /><searchLink fieldCode="AU" term="%22Linglart+A%22">Linglart A</searchLink>; Paris Saclay University, AP-HP, INSERM Bicêtre Paris Saclay Hospital, Le Kremlin Bicêtre, Paris, France.
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  Data: <searchLink fieldCode="JN" term="%22101266602%22">Orphanet journal of rare diseases</searchLink> [Orphanet J Rare Dis] 2026 Feb 03; Vol. 21 (1). <i>Date of Electronic Publication: </i>2026 Feb 03.
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  Data: <i>Publisher: </i><searchLink fieldCode="PB" term="%22BioMed+Central%22">BioMed Central </searchLink><i>Country of Publication: </i>England <i>NLM ID: </i>101266602 <i>Publication Model: </i>Electronic <i>Cited Medium: </i>Internet <i>ISSN: </i>1750-1172 (Electronic) <i>Linking ISSN: </i><searchLink fieldCode="IS" term="%2217501172%22">17501172 </searchLink><i>NLM ISO Abbreviation: </i>Orphanet J Rare Dis <i>Subsets: </i>MEDLINE
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