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Article History

Received: 26 January 2022

Accepted: 12 September 2022

First Online: 17 November 2022

Declarations

:

: Ethical approval has been sought by the University of Liverpool Research Ethics Committee (reference 10384).Once the study has been completed, a lay summary of the results will be disseminated to all participants that have taken part and who have stated that they would like to receive future correspondence from the research team. The results will also be disseminated to professional organisations and patient charities/advocacy groups, as well as by presentation at scientific conferences and publication in scientific journals. Reporting will follow the COS-STAR recommendations [].

: Not applicable.

: RB has nothing to disclose related to the submitted work. Outside the submitted work, RB is a member of the NICE Epilepsies Guideline Committee and a lived experience representative on the RCPCH Epilepsy Board.TOB has nothing to disclose related to the submitted work. Outside of the submitted work, TOB has received research grant funding and/or consultancies from companies undertaking clinical trials of new epilepsy therapies: Eisai, UCB, LivaNova, ES Therapeutics, Supernus, BioGen.JC received honoraria from serving on the scientific advisory board of UCB Nordic and Eisai AB and received honoraria from giving lectures from UCB Nordic and Eisai AB.JF receives NYU salary support for consulting work and/or attending Scientific Advisory Boards on behalf of the Epilepsy Study Consortium for Adamas, Aeonian/Aeovian, Anavex, Arkin Holdings, Arvelle Therapeutics, Inc., Athenen Therapeutics/Carnot Pharma, Baergic Bio, Biogen, BioXcel Therapeutics, Cavion, Cerebral Therapeutics, Cerevel, Crossject, CuroNZ, Eisai, Eliem Therapeutics, Encoded Therapeutics, Engage Therapeutics, Engrail, Epiminder, Equilibre BioPharmaceuticals, Fortress Biotech, Greenwich Biosciences, GW Pharma, Janssen Pharmaceutica, Knopp Biosciences, Lundbeck, Marinus, Mend Neuroscience, Merck, NeuCyte, Inc., Neurocrine, Otsuka Pharmaceutical Development, Ovid Therapeutics Inc., Passage Bio, Praxis, Redpin, Sage, SK Life Sciences, Sofinnova, Stoke, Supernus, Synergia Medical, Takeda, UCB Inc., West Therapeutic Development, Xenon, Xeris, Zogenix, Zynerba. JF has also received research support from the Epilepsy Research Foundation, Epilepsy Study Consortium (Funded by Andrews Foundation, Eisai, Engage, Lundbeck, Pfizer, SK Life Science, Sunovion, UCB, Vogelstein Foundation) Epilepsy Study Consortium/Epilepsy Foundation (Funded by UCB, Engage, Neurelis, SK Life Science), GW/One8 Foundation/FACES and NINDS. She is on the editorial board of Lancet Neurology and Neurology Today. She is Chief Medical/Innovation Officer for the Epilepsy Foundation for which NYU receives salary support. She has received travel reimbursement related to research, advisory meetings, or presentation of results at scientific meetings from the Epilepsy Study Consortium, the Epilepsy Foundation, Arvelle Therapeutics, Inc., Biogen, Cerevel, Engage, Lundbeck, NeuCyte, Inc., Otsuka, Sage, UCB, Xenon, Zogenix. NJ receives grant funding paid to her institution for grants unrelated to this work from NINDS (NIH U24NS107201, NIH IU54NS100064, 3R01CA202911-05S1, R21NS122389, R01HL161847). She is the Bludhorn Professor of International Medicine. She receives an honorarium for her work as an Associate Editor of Epilepsia.AGN has nothing to disclose related to the submitted work. Outside the submitted work, AGN has served in advisory boards and received honoraria as a speaker from Arvelle/Angelini, Bial, Biocodex, Esteve, GW Pharma, PTC Therapeutics, Stoke, UCB Pharma, and Zogenix. AGN has also received research grants from Biocodex, GW Pharma, PTC Therapeutics and Zogenix.ET has nothing to disclose related to the submitted work. Outside the submitted work, ET has received consultancy fees from Arvelle, Argenx, Clexio, Celegene, UCB, Eisai, Epilog, Bial, Medtronic, Everpharma, Biogen, Takeda, Liva-Nova, Newbridge, Sunovion, GW Pharmaceuticals, and Marinus; speaker fees from Arvelle, Bial, Biogen, Böhringer Ingelheim, Eisai, Everpharma, GSK, GW Pharmaceuticals, Hikma, Liva-Nova, Newbridge, Novartis, Sanofi, Sandoz and UCB; research funding (directly, or to his institution) from GSK, Biogen, Eisai, Novartis, Red Bull, Bayer, and UCB. ET receives Grants from Austrian Science Fund (FWF), Österreichische Nationalbank, and the European Union. ET is the CEO of Neuroconsult Ges.m.b.H.PT has nothing to disclose related to the submitted work. Outside the submitted work, PT has received honoraria from Arvelle, Bial, Eisai, Sanofi, UCB Pharma and Veriton.PW chairs the COMET management group.All other authors have nothing to disclose related to the submitted work.