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Article History

Received: 12 February 2021

Accepted: 16 August 2021

First Online: 16 September 2021

Declarations

:

: This project was reviewed and approved by the Institutional Review Boards of Boston Children’s Hospital, Cleveland Clinic Foundation, Colorado Children’s Hospital, and sites participating in the Rett and Rett-Related Disorders Natural History Study. Written informed consent to participate was obtained from parents or legal guardians of all participants.

: Written informed consent for publication or waiver of consent to use retrospective data was obtained from parents or legal guardians for all individuals involved in the study.

: Heather E. Olson: site PI of clinical trials in CDD sponsored by Ovid Therapeutics and Marinus Pharmaceuticals. PI of “Diagnosis and genotype-phenotype correlations in early life epilepsy and CDKL5 disorder” NINDS award (1K23NS107646). Funding for the Boston Children’s Hospital CDKL5 Center of Excellence provided by the International Foundation for CDKL5 Research. Consulting for Takeda and Ovid Therapeutics. Scott T. Demarest: site PI of clinical trials in CDD sponsored by Ovid Therapeutics and Marinus Pharmaceuticals. Consulting for Upsher-Smith and BioMarin. All remuneration has been made to his department. Elia Pestana-Knight: site PI of clinical trial in CDD sponsored by Marinus Pharmaceuticals. Co-PI of Cleveland Clinic CDD Center of Excellence established by the International Foundation for CDKL5 Research. Consultant for Marinus Pharmaceuticals. Ahsan N. Moosa: site co-investigator for clinical trials in CDD sponsored by Marinus Pharmaceuticals. Bernhard Suter: site PI of a clinical trial in CDD sponsored by Marinus Pharmaceuticals. Site PI of a clinical trial in Rett syndrome sponsored by RSRT, the investigator-initiated trial using ketamine. PI of Texas Children’s Hospital CDD Center of Excellence established by the International Foundation for CDKL5 Research. Jeffrey L. Neul: consultancy to GW Pharmaceuticals, Acadia, AveXis, Ovid Therapeutics. Data and Safety Monitoring Board for Roche, Ovid Therapeutics. Alan K. Percy: PI of the NICHD-funded Natural History Study. Site PI of clinical trials in Rett syndrome sponsored by Anavex and Acadia and the investigator-initiated trial using ketamine. Consultant with Acadia. Eric D. Marsh: site PI of clinical trial in CDD sponsored by Marinus Pharmaceuticals. Site PI for clinical trials for DS and LGS trials sponsored by Zogenix. Provides research support and clinical Center of Excellence support for the International Foundation for CDKL5 Research. Timothy A. Benke: site co-PI of clinical trials in CDD sponsored by Ovid Therapeutics and Marinus Pharmaceuticals. Consulting for AveXis, Ovid Therapeutics, Takeda, and Marinus Pharmeceuticals. All remuneration has been made to his department. Annapurna Poduri: SAB for TevardBio, no personal remuneration. Carolyn Daniels, Isabel Haviland, Lindsay Swanson, Caitlin Greene, AnneMarie M. Denny, Andrea Fidell, Cary Fu, Xiaoming Zhang, Judith L. Weisenberg: no competing interests.