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Elsa Rossignol is a paid consultant for Acadia Pharmaceuticals and Taysha Gene Therapies, Inc. and is an investigator for the ongoing REVEAL gene therapy trials by Taysha Gene Therapies, Inc. Daniel E. Lumsden is a paid consultant to Neurogene and has received unrestricted educational grants from Medtronic to support attendance at scientific meetings. Deborah A. Bilder is a paid consultant for Taysha Gene Therapies, Inc. Chelsea Karbocus, Emily McGinnis, and Kristin LaBounty\u00a0Phillips are employees and shareholders of Taysha Gene Therapies, Inc., which is developing an investigational gene therapy for Rett syndrome and sponsored the research presented in this publication. Natalie Guido-Estrada, Monica Coenraads, Sigal Hertz Tirosh, Paige Nues, Sabrina Millson, Rachael Stevenson, and John Ashkenas report no conflicts of interest.","order":1,"name":"Ethics","label":"Conflict of Interest","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"Ethics committee approval was not required for this study, as it was determined to be minimal risk to participants. Nonetheless, strict ethical procedures were followed in accordance with the Declaration of Helsinki\u00a01964 and its later amendments. Participation was entirely voluntary and privacy protections included anonymous data collection (i.e., no personally identifiable information was collected) and secure, access-restricted data storage consistent with relevant data protection regulations (e.g., General Data Protection Regulation and applicable USA privacy standards). The survey was conducted according to the ethical principles for market research as outlined by the American Marketing Association. Data were anonymized by third-party vendors. Caregivers were presented with a brief study overview that included the research objectives and the name of the study sponsor prior to participation. Consent to participate was implied by the caregivers\u2019 initiation of the online survey by clicking \u201cAgree to continue.\u201d As the survey was conducted anonymously, separate consent for publication of individual data was not obtained. Results are reported only in aggregate form, and no information that could reasonably identify participants is included in the manuscript. Up to a pre-established quota (total n=112), participants in the USA, Canada, and the UK received $25 compensation; all subsequent participants chose to proceed without compensation. Due to regional legislation, compensation was not available to Israeli participants; in lieu of compensation, a comparable donation was made toward the IRSA.","order":2,"name":"Ethics","label":"Ethical Approval","group":{"name":"EthicsHeading","label":"Declarations"}}]}}