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Authors
Johnson, Ben https://orcid.org/0000-0003-3938-0920
Gibson, Gregor
Baskerville, Daniel
Castellano, Giorgio
de Courcy, Jonathan
Iqbal, Halima
Piercy, James
Williams, Angela
Pinedo-Villanueva, Rafael
Rylands, Angela
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Funding
Funding for this research was provided by:
Kyowa Kirin International, Marlow, UK;
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Article History
Received: 11 August 2023
Accepted: 14 May 2025
First Online: 6 June 2025
Declarations
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: The surveys were submitted to various Institutional Review Boards. The Freiburger Ethik-Kommission International approved the HD survey in August 2017. The Salus IRB approved the PSP survey in July 2018. Ethical exemption determination was Granted by the Western IRB for other surveys (ALS - March 2020; EoE – July 2020; GvHD - June 2019; MG - March 2020). Physicians, patients and caregivers all provided informed consent to participate. Study results are presented as aggregate analyses that preclude subject identification.
: Not applicable.
: BJ, AR and AW are employees of Kyowa Kirin International. R P-V has received research funding from Kyowa Kirin International and consulting fees from Kyowa Kirin International. GG, JdC, GC, JP, HI and DB are full-time employees of Adelphi Real World, which received funding for participating in this research.
