Mendoza, Meg
Tran, Christopher
Bril, Vera
Katzberg, Hans D.
Barnett-Tapia, Carolina http://orcid.org/0000-0001-5546-0221
Funding for this research was provided by:
Grifols (CLinician Initiated Research)
Article History
Received: 6 June 2023
Accepted: 21 August 2023
First Online: 26 September 2023
Declarations
:
: Meg Mendoza reports no disclosures. Christopher Tran reports no disclosures. Hans D. Katzberg has been a consultant to Grifols, CSL Behring, UCB, Takeda (Shire), Alnylam, Octapharma, Akcea, Alexion, Pfizer, Biogen and Terumo: he has received research support from Takeda (Shire) and CSL Behring. Vera Bril has been a consultant to Grifols, CSL Behring, UCB, Argenx, Takeda (Shire), Alnylam, Octapharma, Powell Mansfield Inc., Akcea, Immunovant and Alexion; she has received research support from Grifols, CSL Behring, UCB, Argenx, Takeda (Shire), Octapharma, Baxalta and Biogen. Carolina Barnett-Tapia has been consultant to Alexion, Argenx, UCB and Sanofi; she has received grant support from Grifols and Octapharma. She is the developer of the MGII and may receive royalties.
: This study was reviewed and approved by the University Health Network Research Ethics Board (Study number: 18-5514) and conforms to the World Medical Association Declaration of Helsinki. Participants of the pilot test provided written consent and answering the anonymous electronic survey was considered as implicit consent. We obtained written permission from the developers of the INCAT, RODS and CAPPRI to use the measures in this study. We obtained a license for the use of the SF-12 from QualityMetric, and we registered our study to use the EQ-5D-5L with EuroQoL (non-commercial, fast-track digital, no license needed).