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Authors
Laney, Dawn A. https://orcid.org/0000-0001-8344-8078
Banks, Kayla A.
Botha, Eleanor G.
Keever, Maria
Long, Valynne
Foley, Allison L.
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Funding
Funding for this research was provided by:
Sanofi Genzyme (SGZ201812244)
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Article History
Received: 15 May 2024
Accepted: 20 October 2024
First Online: 14 January 2025
Declarations
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: Ethics approval and consent to participate. The survey was conducted with the ethical principles that have their origins in the Declaration of Helsinki, in compliance with the approved protocol, Guidance on Good Clinical Practice guidelines, and applicable regulatory requirements. Approval was obtained from Emory Institutional Review Board, before conducting the study or enrolling any participants. Informed consent for genetic testing was obtained from all individuals undergoing testing. Emory Institutional Review Board waived authorization for the initial data pull and review of all electronic medical record data to identify and contact at risk individual and their providers.
: Not applicable.
: DL has disclosed that she has received honoraria and research funding as an investigator, researcher, speaker, board member registries/coordinator for Sanofi Genzyme; has received research funding and honoraria as an investigator, speaker, coordinator for Amicus and Shire, now part of Takeda; and is a co-founder and has stock options for ThinkGenetic, Inc. AF and VL are research coordinators on studies and clinical trials from Sanofi Genzyme and Amicus Therapeutics. Authors KB, EB, and MK declare that they have no conflicts of interest.
