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Approval was granted by the Boston Children\u2019s Hospital Institutional Review Board (IRB-P00024211). Participants 18\u00a0years and older provided informed consent; participants younger than 18\u00a0years old provided assent in addition to parental\/guardian consent. Participants were compensated with gift cards up to $250 based on completion of all study procedures.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethics approval and consent to participate"}},{"value":"Not applicable, as this manuscript does not contain any individual person's data in any form (including individual details, images, or videos).","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent for publication"}},{"value":"Kiran Maski has been a consultant for Takeda Pharmaceuticals, Jazz Pharmaceuticals, Alkermes, Avadel, Eisai Pharmaceuticals, Zevra Therapeutics, Taysha Gene Therapies, Synchronicity Pharma, and Harmony Biosciences. She has received research funding from Jazz Pharmaceuticals and Harmony Biosciences. She receives NIH funding from NINDS 5R61NS130215-02.","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}}],"article-number":"54"}}