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

• Vrinda Saraff ,

  Contributed equally to this work with: Vrinda Saraff, Annemieke M. Boot, Agnès Linglart, Oliver Semler, Pol Harvengt, Angela Williams, Karen M. A. Bailey, Fiona Glen, Elin Haf Davies, Sue Wood, Stephen Greentree, Angela J. Rylands

  Roles Conceptualization, Writing – original draft, Writing – review & editing

  * E-mail: vrinda.saraff@nhs.net

  Affiliations 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

  https://orcid.org/0000-0003-3601-8942

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• Annemieke M. Boot ,

  Contributed equally to this work with: Vrinda Saraff, Annemieke M. Boot, Agnès Linglart, Oliver Semler, Pol Harvengt, Angela Williams, Karen M. A. Bailey, Fiona Glen, Elin Haf Davies, Sue Wood, Stephen Greentree, Angela J. Rylands

  Roles Conceptualization, Writing – original draft, Writing – review & editing

  Affiliation University Medical Center Groningen, University of Groningen, Groningen, The Netherlands

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• Agnès Linglart ,

  Contributed equally to this work with: Vrinda Saraff, Annemieke M. Boot, Agnès Linglart, Oliver Semler, Pol Harvengt, Angela Williams, Karen M. A. Bailey, Fiona Glen, Elin Haf Davies, Sue Wood, Stephen Greentree, Angela J. Rylands

  Roles Conceptualization, Writing – original draft, Writing – review & editing

  Affiliation Assistance Publique Hôpitaux de Paris, Université Paris Saclay, Bicêtre Paris-Saclay Hospital, Le Kremlin Bicêtre, France

  https://orcid.org/0000-0003-3455-002X

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• Oliver Semler ,

  Contributed equally to this work with: Vrinda Saraff, Annemieke M. Boot, Agnès Linglart, Oliver Semler, Pol Harvengt, Angela Williams, Karen M. A. Bailey, Fiona Glen, Elin Haf Davies, Sue Wood, Stephen Greentree, Angela J. Rylands

  Roles Conceptualization, Writing – original draft, Writing – review & editing

  Affiliation Department of Pediatrics, Faculty of Medicine and University Hospital Cologne, University of Cologne, Cologne, Germany

  https://orcid.org/0000-0003-0029-7556

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• Pol Harvengt ,

  Contributed equally to this work with: Vrinda Saraff, Annemieke M. Boot, Agnès Linglart, Oliver Semler, Pol Harvengt, Angela Williams, Karen M. A. Bailey, Fiona Glen, Elin Haf Davies, Sue Wood, Stephen Greentree, Angela J. Rylands

  Roles Conceptualization, Writing – original draft, Writing – review & editing

  Affiliation XLH Belgium (Belgium XLH Patient Association), Waterloo, Belgium

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• Angela Williams ,

  Contributed equally to this work with: Vrinda Saraff, Annemieke M. Boot, Agnès Linglart, Oliver Semler, Pol Harvengt, Angela Williams, Karen M. A. Bailey, Fiona Glen, Elin Haf Davies, Sue Wood, Stephen Greentree, Angela J. Rylands

  Roles Conceptualization, Writing – original draft, Writing – review & editing

  Affiliation Kyowa Kirin International, Marlow, United Kingdom

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• Karen M. A. Bailey ,

  Contributed equally to this work with: Vrinda Saraff, Annemieke M. Boot, Agnès Linglart, Oliver Semler, Pol Harvengt, Angela Williams, Karen M. A. Bailey, Fiona Glen, Elin Haf Davies, Sue Wood, Stephen Greentree, Angela J. Rylands

  Roles Conceptualization, Writing – original draft, Writing – review & editing

  Affiliation OPEN Health, Marlow, United Kingdom

  https://orcid.org/0000-0003-1985-4826

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• Fiona Glen ,

  Contributed equally to this work with: Vrinda Saraff, Annemieke M. Boot, Agnès Linglart, Oliver Semler, Pol Harvengt, Angela Williams, Karen M. A. Bailey, Fiona Glen, Elin Haf Davies, Sue Wood, Stephen Greentree, Angela J. Rylands

  Roles Conceptualization, Writing – original draft, Writing – review & editing

  Affiliation OPEN Health, Marlow, United Kingdom

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• Elin Haf Davies ,

  Contributed equally to this work with: Vrinda Saraff, Annemieke M. Boot, Agnès Linglart, Oliver Semler, Pol Harvengt, Angela Williams, Karen M. A. Bailey, Fiona Glen, Elin Haf Davies, Sue Wood, Stephen Greentree, Angela J. Rylands

  Roles Conceptualization, Writing – original draft, Writing – review & editing

  Affiliation Aparito, Wrexham, United Kingdom

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• Sue Wood ,

  Contributed equally to this work with: Vrinda Saraff, Annemieke M. Boot, Agnès Linglart, Oliver Semler, Pol Harvengt, Angela Williams, Karen M. A. Bailey, Fiona Glen, Elin Haf Davies, Sue Wood, Stephen Greentree, Angela J. Rylands

  Roles Conceptualization, Writing – original draft, Writing – review & editing

  Affiliation Kyowa Kirin International, Marlow, United Kingdom

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• Stephen Greentree ,

  Contributed equally to this work with: Vrinda Saraff, Annemieke M. Boot, Agnès Linglart, Oliver Semler, Pol Harvengt, Angela Williams, Karen M. A. Bailey, Fiona Glen, Elin Haf Davies, Sue Wood, Stephen Greentree, Angela J. Rylands

  Roles Conceptualization, Writing – original draft, Writing – review & editing

  Affiliation Kyowa Kirin International, Marlow, United Kingdom

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• Angela J. Rylands

  Contributed equally to this work with: Vrinda Saraff, Annemieke M. Boot, Agnès Linglart, Oliver Semler, Pol Harvengt, Angela Williams, Karen M. A. Bailey, Fiona Glen, Elin Haf Davies, Sue Wood, Stephen Greentree, Angela J. Rylands

  Roles Conceptualization, Writing – original draft, Writing – review & editing

  Affiliation Kyowa Kirin International, Marlow, United Kingdom

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