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Article History

Received: 26 November 2025

Accepted: 13 March 2026

First Online: 26 March 2026

Declarations

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: Not applicable.

: Not applicable.

: JC has received research funding from the Innovative Medicines Initiative, EuroQol, National Institute for Health and Care Research, Sanofi, KMC Healthcare, Duchenne UK, HCD Economics, Oxford University Innovation Ltd, Ferrer Internacional SA, Sensified LLC, uMed; carried out private consultancy projects for Euroqol; and serves as an Associate Editor for British and Irish Orthoptic Journal. PAP has received research funding from the Innovative Medicines Initiative, EuroQol Research Foundation, Sanofi, KMC Healthcare, Duchenne UK, HCD Economics, National Institute for Health and Care Research, Oxford University Innovation Ltd, Ferrer Internacional SA, Sensified LLC, BresMed Health Solutions Ltd, uMed; carried out private consultancy projects for Eli Lilly, IQVIA, and EuroQol Research Foundation. JS has received travel funding from the FSHD-Society & MD-UK. SF has no conflicts to declare. CW has no conflicts to declare. AS has no conflicts to declare. CH is Principal Investigator in FSHD phase 1 clinical trial FORTITUDE, and phase 3 FORTITUDE3, National Chief Investigator of MOVE/MOVE+ FSHD natural history studies. He is a steering committee member of the European clinical trial network (outcome measures) group in FSHD and a key member of the FSHD_UK. CH has received advisory board and speaker honoraria from UCB (and research support), Roche, Biogen, Novartis, Argenx, Avidity and Lupin.