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Article History

Received: 19 June 2020

Accepted: 22 December 2020

First Online: 6 January 2021

Ethics approval and consent to participate

: The study was approved by the ethics committees of Ulm University (approval number 19/12) and MHH (approval number 6269). Written informed consent was obtained from all participants in advance to study enrolment.

: All study participants gave their written consent to the publication of anonymous (cohort) data.

: The authors declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: LM reports no conflict of interests. OSK has received honoraria as a speaker/consultant and/or funding for travel expenses from the German Neuromuscular Society [Deutsche Gesellschaft fuer Muskelkranke (DGM e.V.)], Novartis, Biogen GmbH, the Jain Foundation and Biermann Verlag GmbH. She has received academic research support by the Ludwig-Maximilians-University of Munich, FoeFoLe program, Reg.-No. 747, 11/11-05/13, and the Hannover Medical School Young Faculty Program, 2018-2020. She has received research support from the Friedrich-Baur-GmbH, Burgkunstadt 12/13-12/15 and the German Neuromuscular Society “Deutsche Gesellschaft fuer Muskelkranke (DGM e.V.), 2019-2021. CDW received honoraria from Biogen (as an Advisory board member and for lectures) and from Hoffmann-La Roche (as a consultant and Advisory board member). She also received travel expenses from Biogen. ZU received honoraria from Biogen for lectures and consultation. SP reports no conflict of interests. CG reports no conflict of interests. GR received travel funding from Biogen GmbH. GW reports no conflicts of interest. AO has received honoraria as a speaker/consultant from the German Neuromuscular Society “Deutsche Gesellschaft fuer Muskelkranke (DGM e.V.)” and Biogen GmbH. She has received academic research support by PRACTIS—Clinician Scientist Program of Hannover Medical School, funded by the German Research Foundation (DFG, ME 3696/3-1). ACL received honoraria from AB Science, Biogen, Cytokinetics, GSK, Orion Pharma, Novartis, Tau Rx Therapeutics Ltd., TEVA Pharmaceuticals, Mitsubishi and Hoffmann-La Roche. SPe has received grants by the German Neuromuscular Society [Deutsche Gesellschaft fuer Muskelkranke (DGM e.V.)], the Federal Ministry of Education and Research (BMBF), the German Israeli Foundation (GIF) for Scientific Research and Development and the EU Joint Programme for Neurodegenerative Disease Research (JPND). She has received speaking honoraria from Desitin Pharma, Biogen GmbH, Novartis and TEVA as well as fees for consulting from Biogen GmbH, Roche Pharma, Cytokinetics Inc., DL reports no disclosures.