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A patient-centred and multi-stakeholder co-designed observational prospective study protocol: Example of the adolescent experience of treatment for X-linked hypophosphataemia (XLH).

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Title: A patient-centred and multi-stakeholder co-designed observational prospective study protocol: Example of the adolescent experience of treatment for X-linked hypophosphataemia (XLH).
Authors: Saraff V; Department of Paediatric Endocrinology and Diabetes, Birmingham Women's and Children's Hospital NHS Trust, Birmingham, United Kingdom.; Institute of Applied Health Research, University of Birmingham, Birmingham, United Kingdom., Boot AM; University Medical Center Groningen, University of Groningen, Groningen, The Netherlands., Linglart A; Assistance Publique Hôpitaux de Paris, Université Paris Saclay, Bicêtre Paris-Saclay Hospital, Le Kremlin Bicêtre, France., Semler O; Department of Pediatrics, Faculty of Medicine and University Hospital Cologne, University of Cologne, Cologne, Germany., Harvengt P; XLH Belgium (Belgium XLH Patient Association), Waterloo, Belgium., Williams A; Kyowa Kirin International, Marlow, United Kingdom., Bailey KMA; OPEN Health, Marlow, United Kingdom., Glen F; OPEN Health, Marlow, United Kingdom., Davies EH; Aparito, Wrexham, United Kingdom., Wood S; Kyowa Kirin International, Marlow, United Kingdom., Greentree S; Kyowa Kirin International, Marlow, United Kingdom., Rylands AJ; Kyowa Kirin International, Marlow, United Kingdom.
Source: PloS one [PLoS One] 2024 Jan 19; Vol. 19 (1), pp. e0295080. Date of Electronic Publication: 2024 Jan 19 (Print Publication: 2024).
Publication Type: Journal Article; Clinical Trial Protocol; Research Support, Non-U.S. Gov't
Journal Info: Publisher: Public Library of Science Country of Publication: United States NLM ID: 101285081 Publication Model: eCollection Cited Medium: Internet ISSN: 1932-6203 (Electronic) Linking ISSN: 19326203 NLM ISO Abbreviation: PLoS One Subsets: MEDLINE
Database: MEDLINE Ultimate
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  Data: A patient-centred and multi-stakeholder co-designed observational prospective study protocol: Example of the adolescent experience of treatment for X-linked hypophosphataemia (XLH).
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  Data: <searchLink fieldCode="AU" term="%22Saraff+V%22">Saraff V</searchLink>; Department of Paediatric Endocrinology and Diabetes, Birmingham Women's and Children's Hospital NHS Trust, Birmingham, United Kingdom.; Institute of Applied Health Research, University of Birmingham, Birmingham, United Kingdom.<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="%22Linglart+A%22">Linglart A</searchLink>; Assistance Publique Hôpitaux de Paris, Université Paris Saclay, Bicêtre Paris-Saclay Hospital, Le Kremlin Bicêtre, France.<br /><searchLink fieldCode="AU" term="%22Semler+O%22">Semler O</searchLink>; Department of Pediatrics, Faculty of Medicine and University Hospital Cologne, University of Cologne, Cologne, Germany.<br /><searchLink fieldCode="AU" term="%22Harvengt+P%22">Harvengt P</searchLink>; XLH Belgium (Belgium XLH Patient Association), Waterloo, Belgium.<br /><searchLink fieldCode="AU" term="%22Williams+A%22">Williams A</searchLink>; Kyowa Kirin International, Marlow, United Kingdom.<br /><searchLink fieldCode="AU" term="%22Bailey+KMA%22">Bailey KMA</searchLink>; OPEN Health, Marlow, United Kingdom.<br /><searchLink fieldCode="AU" term="%22Glen+F%22">Glen F</searchLink>; OPEN Health, Marlow, United Kingdom.<br /><searchLink fieldCode="AU" term="%22Davies+EH%22">Davies EH</searchLink>; Aparito, Wrexham, United Kingdom.<br /><searchLink fieldCode="AU" term="%22Wood+S%22">Wood S</searchLink>; Kyowa Kirin International, Marlow, United Kingdom.<br /><searchLink fieldCode="AU" term="%22Greentree+S%22">Greentree S</searchLink>; Kyowa Kirin International, Marlow, United Kingdom.<br /><searchLink fieldCode="AU" term="%22Rylands+AJ%22">Rylands AJ</searchLink>; Kyowa Kirin International, Marlow, United Kingdom.
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  Data: <searchLink fieldCode="JN" term="%22101285081%22">PloS one</searchLink> [PLoS One] 2024 Jan 19; Vol. 19 (1), pp. e0295080. <i>Date of Electronic Publication: </i>2024 Jan 19 (<i>Print Publication: </i>2024).
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  Data: Journal Article; Clinical Trial Protocol; Research Support, Non-U.S. Gov't
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