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Authors
Nasseri Moghaddam, Zahra
Reinhardt, Emily K. https://orcid.org/0009-0009-1771-8768
Thurm, Audrey
Potter, Beth K.
Smith, Maureen
Graham, Celeste
Tiller, Beth H.
Baker, Steven A.
Bilder, Deborah A.
Bogar, Regina
Britz, Jacobus
Cafferty, Rachel
Coller, Daniel P.
DeGrauw, Ton J.
Hall, Vicky
Lipshutz, Gerald S.
Longo, Nicola
Mercimek-Andrews, Saadet
Miller, Judith S.
Pasquali, Marzia
Salomons, Gajja S.
Schulze, Andreas
Wheaton, Celine P.
Williams, Kayla F.
Young, Sarah P.
Li, Jasmine
Balog, Sofia
Selucky, Theresa
Stöckler-Ipsiroglu, Sylvia
Wallis, Heidi
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Funding
Funding for this research was provided by:
Patient-Centered Outcomes Research Institute (EACB-23059)
National Institute of Mental Health (ZIC MH002961)
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Article History
Received: 6 December 2024
Accepted: 1 July 2025
First Online: 7 August 2025
Declarations
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: All focus groups and Delphi surveys received institutional review board (IRB) approval from the North Star Review Board (protocols NB200065, NB300094; ). Informed consent was obtained from all focus group and Delphi survey participants prior to participation.
: Not applicable.
: ZNM reports a stipend and travel support from ACD for this project. BKP reports a grant from INFORM RARE which receives industry matching research funds from Takeda, Biomarin, Ultragenyx, and Perkin Elmer. NL reports the following: clinical trial support for Amgen/Horizon, Amicus Therapeutics, Audentes/Astellas, BioMarin, Chiesi/Protalix, Genzyme/Sanofi, Jnana, Moderna, PTC Therapeutics, Takeda, and Ultragenyx; serves on advisory boards for Amgen/Horizon, Amicus Therapeutics, Audentes/Astellas, BioMarin, Chiesi/Protalix, Genzyme/Sanofi, Ipsen, Jaguar Gene Therapy, Jnana, Leadiant Biosciences, Moderna, Nestle Pharma, PTC Therapeutics, Reneo, and Ultragenyx Data Safety; serves on monitoring boards for Applied Therapeutics, iEcure, and Regeneron. GSL reports grant and travel support funding from ACD. JSM reports a consulting agreement with Ultragenyx and Johnson & Johnson, and has done legal consultation for a variety of cases. AS reports receiving consultation fees from Ceres Brain. EKR, AT, MS, CG, BHT, SAB, DAB, RB, JB, RC, DPC, TJDG, VH, SM-A, MP, GSS, CPW, KFW, SPY, JL, SB, TS, SS-I, and HW declare they have no conflicts of interest.
