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Authors
de Vries, Petrus J. https://orcid.org/0000-0002-8915-1571
Heunis, Tosca-Marie https://orcid.org/0000-0001-7644-5231
Vanclooster, Stephanie
Chambers, Nola https://orcid.org/0000-0001-7008-472X
Bissell, Stacey
Byars, Anna W. https://orcid.org/0000-0002-3929-6107
Flinn, Jennifer
Gipson, Tanjala T. https://orcid.org/0000-0002-6903-743X
van Eeghen, Agnies M. https://orcid.org/0000-0001-8149-8645
Waltereit, Robert https://orcid.org/0000-0002-5338-2765
Capal, Jamie K. https://orcid.org/0000-0002-7579-375X
Cukier, Sebastián https://orcid.org/0000-0002-1497-4709
Davis, Peter E.
Smith, Catherine
Kingswood, J. Chris https://orcid.org/0000-0001-8794-9857
Schoeters, Eva
Srivastava, Shoba
Takei, Megumi
Gardner-Lubbe, Sugnet https://orcid.org/0000-0003-2762-9944
Kumm, Aubrey J. https://orcid.org/0000-0002-9472-7539
Krueger, Darcy A. https://orcid.org/0000-0002-7250-7391
Sahin, Mustafa https://orcid.org/0000-0001-7044-2953
De Waele, Liesbeth https://orcid.org/0000-0001-7126-575X
Jansen, Anna C. https://orcid.org/0000-0002-3835-2824
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Funding
Funding for this research was provided by:
King Baudouin Foundation Fund Dr & Mrs Charles Tournay‑Dubisson (2019‑J1120010‑213544)
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Article History
Received: 27 April 2023
Accepted: 28 August 2023
First Online: 14 September 2023
Declarations
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: This study was approved by the University of Cape Town Faculty of Health Sciences Human Research Ethics Committee (HREC), the site of the principal investigator, with protocol number HREC 849/2020.
: Not applicable.
: PJdV was a study steering committee member of three phase III trials in TSC sponsored by Novartis, was on the scientific advisory group of the TOSCA international disease registry sponsored by Novartis, and has provided consultancy to GW Pharma. SB is funded by Cerebra to investigate sleep and behavior in rare genetic syndromes, including TSC. AVE is on the scientific advisory board and received grant support from Jazz Pharmaceuticals. JC receives grant funding from the NIH and the Department of Defense for projects related to 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. CS receives salary support from the TSC Alliance, a non‑profit organization that reports revenue from individual donors and corporations including Greenwich Biosciences, GW Pharma, Mallinckrodt, Nobelpharma, Novartis, Ovid, UCB, and Upsher‑Smith. DAK reports grants from the 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. 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. ACJ was on the scientific advisory group of the TOSCA international disease registry sponsored by Novartis and has provided consultancy to GW Pharma. The remaining authors declared no competing interests.
