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Authors
Filler, Guido https://orcid.org/0000-0003-1891-6765
Tremblay, Olivia
Chen, Emily
Huang, Susan Shi Han
Stein, Robert
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Article History
Received: 27 July 2022
Revised: 19 October 2022
Accepted: 7 November 2022
First Online: 21 December 2022
Declarations
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: G Filler received a speaker honorarium from Ultragenyx Inc. and serves on the Ultragenyx Advisory Board. No other authors have conflicts of interest relevant to this article to disclose.
: The manuscript was prepared and conducted ethically in accordance with the World Medical Association Declaration of Helsinki. The study was approved by the local ethics research board (file number 118344, PI G Filler, last approved 03 May 2022). Although the need for informed consent was waived by the ethics committee, each family was consented verbally for this study.
