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Article History

First Online: 13 February 2022

Declarations

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: SB is funded by Cerebra to investigate sleep and behaviour in rare genetic syndromes, including TSC. PD receives partial salary support from the NIH for participation in studies related to TSC, as well as from Aucta Pharmaceuticals for a study of topical sirolimus for facial angiofibromas in TSC and Marinus Pharmaceuticals for a study of ganaxolone for TSC-related epilepsy. DAK reports grants from National Institutes of Health (NINDS) during the conduct of the study as well as the personal fees from Novartis Pharmaceuticals, personal fees from Greenwich Bioscience, grants from Marinus Pharmaceuticals, personal fees from Nobelpharma America, personal fees from REGENXBIO, and grants and non-financial support from TSC Alliance outside the submitted work. CS receives salary support from the TSC Alliance, a non-profit organisation which reports revenue from individual donors and corporations including Greenwich Biosciences, GW Pharma, Mallinckrodt, Nobelpharma, Novartis, Ovid, UCB and Upsher-Smith. PJdV was a study steering committee member of three phase III trials sponsored by Novartis. He and AJ were also on the scientific advisory group of the TOSCA international disease registry sponsored by Novartis. MS reports grant support from Novartis, Biogen, Astellas, Aeovian, Bridgebio and Aucta, and has served on Scientific Advisory Boards for Novartis, Roche, Regenxbio, SpringWorks Therapeutics, Jaguar Therapeutics and Alkermes.