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Authors
Theodore-Oklota, Christina
O’Mara, Ashley
Butler, Jessica
Egan, Shayna
Hribal, Elizabeth https://orcid.org/0009-0000-7864-4066
Evans, Christopher
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Article History
Received: 17 January 2025
Accepted: 15 August 2025
First Online: 22 October 2025
Declarations
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: The study materials were initially submitted to WCG IRB on January 9, 2019 and received initial approval on January 29, 2019. Subsequent amendments were submitted over the course of the study to account for modifications to the study materials and approval of the final amendment submission was received on September 8, 2020. Prior to their participation, all study participants reviewed and signed the informed consent and HIPAA authorization form (ICF) and assent form (if applicable).
: All study participants reviewed and signed the informed consent and HIPAA authorization form (ICF), which included consent for publication, and assent form (if applicable). The ICF detailed precautions to protect personal health information and confirmed that if information about the study is published, participants’ names will not be provided and the results will be reported at a group level.
: Ultragenyx authors were employees and stockholders of Ultragenyx.
