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Article History

Received: 23 January 2025

Revised: 28 February 2025

Accepted: 10 March 2025

First Online: 9 April 2025

Declarations

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: FX and BM are members of the EuroQol group. The authors declare no competing interests. MB reports no disclosures. NW reports no disclosures. AR reports no disclosures. JF was funded as a fellow of the Cluster for Excellence in Clinical Neuroscience of the Hertie Foundation and received funding of the National Ataxia Foundation (NAF). TS-H receives research grants from Celgene/bms and research grant from Hexal AG. HJ reports no disclosures. FX reports no disclosures. TK is receiving research support from the Bundesministerium für Bildung und Forschung (BMBF), the National Institutes of Health (NIH) and Servier. Within the last 24 months, he has received consulting fees from Biogen, UCB, and Vico Therapeutics. JF was funded within the Advanced Clinician Scientist Programme (ACCENT, funded by the German Federal Ministry of Education and Research (BMBF); funding code 01EO2107) and as a PI of the iBehave Network, sponsored by the Ministry of Culture and Science of the State of North Rhine-Westphalia. JF received funding from the National Ataxia Foundation (NAF) and has received consultancy honoraria from Vico therapeutics, unrelated to the present manuscript. BvdW receives research support from ZonMw, Dutch Scientific Organization, Hersenstichting, and Christina Foundation; has served on scientific advisory boards and/or did paid consultancy for Servier, Biohaven, Vico therapeutics, and Biogen; and receives royalties from BSL/Springer-Nature. AT received research grants from the German Heredo-Ataxia Society (Deutsche Heredo-Ataxie-Gesellschaft e.V.), “Freunde und Förderer der Neurologie der Universitätsmedizin Essen”, travel grants from the German Academic Exchange Service (Deutscher Akademischer Austauschdienst, DAAD) and MERCUR/UA (Mercator Research Center Ruhr/ Universitätsallianz Ruhr), and a scholarship of UMEA/ DFG (University Medicine Essen Clinician Scientist Academy—a program funded by the German Research Foundation, Deutsche Forschungsgemeinschaft; FU356/12–1). MMS and LA were funded by the European Regional Development Fund (ERDF), through the Centro 2020 Regional Operational Programme under project CENTRO-01–0145-FEDER-181240 and through the COMPETE 2020—Operational Programme for Competitiveness and Internationalisation and Portuguese national funds via FCT—Fundação para a Ciência e a Tecnologia, under projects 2022.06118.PTDC, UIDB/04539/2020, UIDP/04539/2020 and LA/P/0058/2020, and European funds (GeneT GA 101059981) and by National Ataxia Foundation (NAF). PS was funded by FCT under the grant SFRH/BD/148451/2019. PG is supported by the National Institute for Health Research University College London Hospitals Biomedical Research Centre UCLH. PG receives also support from the North Thames CRN. PG and HGM, work at University College London Hospitals/ University College London, which receives a proportion of funding from the Department of Health’s National Institute for Health Research Biomedical Research Centre’s funding scheme. PG received funding from CureSCA3 in support of HGM work. PG has received grants and honoraria for advisory board from Vico Therapeutics, honoraria for advisory board from Triplet Therapeutics, grants and personal fees from Reata Pharmaceutical, grants from Wave.

: ESMI and EUROSCA were approved by the ethics committees of the participating centers and have been performed in accordance with the ethical standards laid down in the 1964 Declaration of Helsinki and its later amendments. Written informed consent was obtained from all study participants.