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Article History

Received: 2 July 2024

Revised: 7 November 2024

Accepted: 9 November 2024

First Online: 4 March 2025

Declarations

:

: Elena Pegoraro acknowledges payments or honoraria for lectures, presentations, speakers bureaus, manuscript writing or educational events from Biogen, Alexion and Roche; support for attending meetings and/or travels from Roche, Biogen, Argenx and Alexion; payments for participation on a Data Safety Monitoring Board or Advisory Board from Alexion, UCB Biopharma, Santhera and Sanofi. Luca Bello acknowledges research support from PTC Therapeutics; payments or honoraria for lectures, presentations, speakers bureaus, manuscript writing or educational events from PTC Therapeutics and Pfizer; payments for expert testimony from PTC Therapeutics; payments for participation on a Data Safety Monitoring Board or Advisory Board from PTC Therapeutics, Edgewise Therapeutics, and Roche. Gianni Sorarù acknowledges research support from ARISLA SYMP-ALS and PNRR-MR1-2022–12375938; payments for participation on a Data Safety Monitoring Board or Advisory Board from Advisory Board Zambon Italia SLA and Advisory Board PHARMALEX Italy S.p.A

: Clinical investigations adhered to the Declaration of Helsinki principles, and written informed consent, approved by institutional review boards, was obtained from all participants or their guardians in accordance with ethical requirements. The coordinating center IRB protocol number is 428n/AO/23.