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Article History

Received: 9 August 2023

Accepted: 26 July 2024

First Online: 2 August 2024

Declarations

:

: Ingrid E. Scheffer has served on scientific advisory boards for UCB, Eisai,GlaxoSmithKline, BioMarin, Nutricia, Rogcon, Chiesi, Encoded Therapeutics, Knopp Biosciences and Xenon Pharmaceuticals; has received speaker honoraria from GlaxoSmithKline, UCB, BioMarin, Biocodex, Chiesi, Liva Nova and Eisai; has received funding for travel from UCB, Biocodex, GlaxoSmithKline, Biomarin and Eisai; has served as an investigator for Zogenix, Zynerba, Ultragenyx, GW Pharma, UCB, Eisai, Xenon Pharmaceuticals, Anavex Life Sciences, Ovid Therapeutics, Epigenyx, Encoded Therapeutics and Marinus; and has consulted for Zynerba Pharmaceuticals, Atheneum Partners, Ovid Therapeutics, Care Beyond Diagnosis, Epilepsy Consortium and UCB; and is a Nonexecutive Director of Bellberry Ltd. She may accrue future revenue on pending patent WO61/010176 (filed: 2008): Therapeutic Compound; has a patent for SCN1A testing held by Bionomics Inc and licensed to various diagnostic companies; has a patent molecular diagnostic/theranostic target for benign familial PCT/AU2012/001321 (TECH ID:2012‐009). JC serves on the Drug Safety Monitoring Board for an Anavex Clinical Trial, and is a member of an endpoint adjudication committee for a Taysha gene therapy trial. The remaining authors declare no competing interests or conflicts of interest.

: Project was reviewed and approved by Austin Health Human Research Ethics Committee. All participants completed an ethics committee approved specific consent form for the study.

: The approved consent form for the study signed by all participants included consent to publication for all participants.