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Authors
Willemse, Sean W. http://orcid.org/0000-0002-0198-5740
Roes, Kit C. B.
Van Damme, Philip
Hardiman, Orla
Ingre, Caroline
Povedano, Monica
Wray, Naomi R.
Gijzen, Marleen
de Pagter, Mirjam S.
Demaegd, Koen C.
Janse, Annemarie F. C.
Vink, Roel G.
Sleutjes, Boudewijn T. H. M.
Chiò, Adriano
Corcia, Philippe
Reviers, Evy
Al-Chalabi, Ammar
Kiernan, Matthew C.
van den Berg, Leonard H.
van Es, Michael A.
van Eijk, Ruben P. A.
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Funding
Funding for this research was provided by:
Motor Neurone Disease Association
FightMND
Fonds Wetenschappelijk Onderzoek (T003519N)
Stichting ALS Nederland
Ulla-Carin Lindquists stiftelse för ALS-forskning
Fondation Thierry Latran
Fundación Francisco Luzon
Alan Davidson Foundation
My Name'5 Doddie Foundation
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Article History
Received: 5 October 2022
Accepted: 3 November 2022
First Online: 5 December 2022
Declarations
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: Ethics approval was granted on the 25th of June 2021 by the Institutional Review Board of the UMC Utrecht, the Netherlands, with reference number 21-215. Written, informed consent to participate will be obtained from all patients.
: The model consent form can be provided on request. No reference will be made to individual patients in any publication relating to the current trial.
: SWW, KCBR, OH, CI, MP, NRW, MG, MdP, KCD, AFCJ, RGV, BTHMS, PC, ER, AAC, and RPAvE declare no competing interests. PVD has served in advisory boards for Biogen, CSL Behring, Alexion Pharmaceuticals, Ferrer, QurAlis, Cytokinetics, Argenx, UCB, Muna Therapeutics, Alector, Augustine Therapeutics, and VectorY (paid to institution). AC serves on scientific advisory boards for Mitsubishi Tanabe, Biogen, Roche, Denali Pharma, Cytokinetics, Lilly, and Amylyx Pharmaceuticals and has received a research grant from Biogen. MCK is funded by the National Health and Medical Research Council of Australia Program Grant (#1132524), Partnership Project (#1153439) and Practitioner Fellowship (1156093).LHvdB declares fees to his institution from Biogen, Wave, Amylyx, Ferrer, and Cytokinetics for being on a scientific advisory board; fees to his institution from Amylyx for a lecture; an unrestricted educational grant from Takeda; and is the Chair of ENCALS and TRICALS. MAvE has consulted for Biogen, and has received travel grants from Shire (formerly Baxalta) and serves as medical monitor for Ferrer in the ADORE trial (NCT05178810), other funding sources include the Netherlands Organization for Health Research and Development (Vidi scheme), The Thierry Latran Foundation, Motor Neurone Disease Association, FIGHT-MND and the ALS Foundation Netherlands. Several authors of this publication are member of the European Reference Network for Rare Neuromuscular Diseases (ERN-NMD).
