Bever, Andrea
Audhya, Ivana
Szabo, Shelagh M. http://orcid.org/0000-0002-9044-3192
Mickle, Alexis
Feeny, David
Malone, Daniel
Neumann, Peter
Iannaccone, Susan
Gooch, Katherine
Funding for this research was provided by:
Sarepta Therapeutics
Article History
Received: 19 January 2024
Accepted: 4 April 2024
First Online: 6 May 2024
Declarations
:
: Ivana Audhya and Katherine Gooch are employees of Sarepta Therapeutics, Inc. and may own stock/options. Shelagh M. Szabo, Andrea Bever and Alexis Mickle are employees of Broadstreet HEOR, which received funds from Sarepta Therapeutics, Inc. to conduct this study. David Feeny, Peter Neumann, and Daniel Malone received consulting fees related to this work. David Feeny has a proprietary interest in Health Utilities Incorporated, Dundas, Ontario, Canada. HUInc. distributes copyrighted Health Utilities Index (HUI) materials and provides methodological advice on the use of HUI. Susan Iannaccone has received research funding or consulting fees from Avexis, Biogen, Fibrogen, Mallinkrodt, Regeneron, Sarepta Therapeutics, Inc., Scholar Rock, PTC Therapeutics, Pfizer, MDA, CureSMA, NIH, Genentech-Roche, and BCBS.
: The study was performed in accordance with the Declaration of Helsinki and received ethical approval from an independent review board (IntegReview IRB SA200030, Approval date October 21, 2020) prior to initiating recruitment and data collection. All participants provided informed consent for participation and eventual publication of the results. Reporting of findings was conducted in accordance with the Standards for Reporting Qualitative Research guidelines []. After reviewing informed consent and assent documents in advance, participants provided verbal consent at the start of the interview.