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Authors
Sivadasan, Ajith
Hernandez, Alejandro
Candido, Elisa
Parkin, Patricia C.
Tu, Karen
Mendoza, Meg
Barnett-Tapia, Carolina https://orcid.org/0000-0001-5546-0221
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Funding
Funding for this research was provided by:
Congressionally Directed Medical Research Programs (W81XWH-19-1-0177, NF180027)
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Article History
Received: 8 July 2025
Accepted: 1 December 2025
First Online: 26 January 2026
Declarations
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: The Research Ethics Boards of the Hospital for Sick Children and the University Health Network approved the retrospective registries and linkage to administrative data, consent was waived due to retrospective registry. The use of the administrative data in this project is authorized under Sect. 45 of Ontario’s Personal Health Information Protection Act (PHIPA) and does not require review by a Research Ethics Board.
: Not applicable.
: AS reports no disclosures. AH reports no disclosures. EC reports no disclosures. PCP reports receiving funds from the Hospital for Sick Children Foundation from donations for Neurofibromatosis Research. KT reports no disclosures. MM reports no disclosures. CBT has served as member of the advisory board for argenx, Alexion, UCB, Janssen and NMD Pharma. She has been a consultant for argenx, Janssen, Novartis and UCB. She has received research support from US Department of Defense, Muscular Dystrophy Canada and MGNet. She is the primary developer of the MGII and may receive royalties.
