Document is current

Article History

Received: 14 July 2021

Accepted: 19 December 2021

First Online: 6 January 2022

Declarations

:

: Written informed consent was obtained from participants. The content validation study was approved by Salus, an international independent review board (IRB). Additionally, local IRB approval was gained in Israel. The psychometric validation study was approved by the NHS Research Ethics Committee.

: Not applicable.

: DE was a paid consultant for Takeda at the time the psychometric validation part of the study was carried out. N Belmatoug was paid for speaking, travel grants, and scientific boards from Sanofi/Genzyme and Takeda. Her institution received research grants from Sanofi/Genzyme and Takeda. PD received speaker honoraria, advisory board honoraria, and institutional research support from Takeda. ÖG-A acts as a consultant and has received speaker honorarium from Takeda and Pfizer. DAH has received consulting fees and fees for non-CME/CE services from Genzyme, Sanofi, and Takeda. IVDS has no conflicts of interest to declare. NW has received consulting fees and honoraria from Takeda, Sanofi-Genzyme, and Pfizer. N Bonner and CP are employees of Adelphi Values. DF, AL, LL, RM, and KS are or were employees of PHMR at the time the study took place. JS and RS are employees of Takeda and stockholders of Takeda Pharmaceuticals Company Limited. AZ has received honoraria from Pfizer, Takeda, and BioEvents, and consultancy fees from Prevail Therapeutics, Avrobio, Insightec, and Takeda.