Saldaris, Jacinta
Leonard, Helen
Wong, Kingsley
Jacoby, Peter
Spence, Mary
Marsh, Eric D.
Benke, Tim A.
Demarest, Scott
Downs, Jenny http://orcid.org/0000-0001-7358-9037
Funding for this research was provided by:
International Foundation for CDKL5 Research
National Institutes of Health (U01 NS114312)
Stan Perron Charitable Foundation
Curtin University
Article History
Accepted: 20 April 2023
First Online: 15 May 2023
Declarations
:
: This study was performed in line with the principles of the Declaration of Helsinki. Ethics approval for this study was provided by Human Research Ethics Committees at The University of Western Australia (RA/4/20/6198; 2020/ET000271) and primary caregivers provided informed consent to participate in the study.
: Helen Leonard: Consultancy for Marinus, Acadia, Newron, Orion, Anavex, GW Pharmaceuticals, Neurogene and AveXis; Clinical Trials with Newron and Anavex; All remuneration has been made to her department. Tim A. Benke: Consultancy for AveXis, Ovid, GW Pharmaceuticals, International Rett Syndrome Foundation, Takeda, and Marinus; Clinical Trials with Acadia, Ovid, GW Pharmaceuticals, Marinus and RSRT; All remuneration has been made to his department. Scott Demarest: Consultancy for Upsher-Smith, Biomarin and Neurogene, Marinus and Ovid Therapeutics; All remuneration has been made to his department. Eric D. Marsh: Consultancy for Stoke therapeutics, Cipla pharmaceuticals. Clinical trials with Acadia, GW pharma, Marinus, RSRT, Biopharm, Stoke therapeutics, Zogenix Pharmaceuticals. Jenny Downs: Consultancy for Marinus, Acadia, Orion, Taysha, Neurogene and AveXis; Clinical Trials with Newron and Anavex; All remuneration has been made to her department. Each of these disclosures relate to subject matter not contained in this manuscript. Peter Jacoby, Jacinta Saldaris, Kingsley Wong, and Mary Spence report no disclosures or conflicts of interest.