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There is an urgent need to investigate the impact of this multiparametric alteration on patients\u2019 lives. Therefore, the COMunication and ATAXia measure (COMATAX) was developed and validated in French and German. Methods: In the PROFA study (NCT05943002), we conducted focus groups and cognitive interviews with patients with FA, professionals and caregivers to elaborate relevant items of communication disabilities. Subsequently, the measure was validated in 93 patients with FA via a mobile health app. For validation, distribution properties, reliability (Cronbach\u2019s alpha) and validity (correlations with VHI-30, SSQ-12, SARA total score, SARA speech item, Speech rate and GAA repeats; known-groups validity by age, sex, and self-rated health\/wellbeing, disease-severity, hearing function, daily activities, and exploratory factor analysis) were calculated. An IRT analysis was performed to assess item characteristics. Results: COMATAX consists of 17 items (five response options each) and an 18th question asking about the most bothersome symptom. We observed high internal consistency for the total COMATAX scale (\u03b1\u2009=\u20090.897), strong correlations with VHI-30 (\n                    <jats:italic>r<\/jats:italic>\n                    =.894), SSQ-12 (\n                    <jats:italic>r<\/jats:italic>\n                    \u2009=\u2009\u2212.531), moderate with SARA score (\n                    <jats:italic>r<\/jats:italic>\n                    =.498), SARA speech item (\n                    <jats:italic>r<\/jats:italic>\n                    =.416), Speech rate (\n                    <jats:italic>r<\/jats:italic>\n                    =-.354), weak with\n                    <jats:italic>GAA<\/jats:italic>\n                    repeat length (r\n                    <jats:sub>\n                      <jats:italic>GAA1<\/jats:italic>\n                    <\/jats:sub>\n                    =-0.207) and the ability to distinguish between different subgroups (disease severity, self-rated health, wellbeing, hearing function, and daily activities). Most items showed good discrimination of communication ability. Conclusion: The COMATAX is a valid and reliable patient-reported communication disability measure, useful in future therapeutic trials in FA.\n                  <\/jats:p>","DOI":"10.1007\/s12311-026-02020-3","type":"journal-article","created":{"date-parts":[[2026,5,23]],"date-time":"2026-05-23T02:38:05Z","timestamp":1779503885000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":1,"title":["A Patient-Reported Outcome Measure of Communication Difficulties in Friedreich Ataxia: 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The study was conducted according to the Declaration of Helsinki and was approved by the Ethics Committee of the University of Medicine Greifswald (BB096\/22a, October 26 2022) and all local ethics committees of participating study sites (RWTH Aachen, Faculty of Medicine: 22-014; University of Bonn: 440\/22; Innsbruck: Medical University of Innsbruck: 1379\/2022, Munich, Medical Faculty: 22\u20131095; Paris: Comit\u00e9 de Protection des Personnes Est III: 2023-A00315-40; and T\u00fcbingen, University T\u00fcbingen Faculty of Medicine: 672\/2022BO2).","order":1,"name":"Ethics","label":"Human Ethics and Consent to Participate","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"CE received honoraria from Biogen. JF was funded within the Advanced Clinician Scientist Programme (ACCENT, funded by the Federal Ministry of Research, Technology and Space (BMFTR) under the funding code (FKZ): 01EO2107) and as a PI of the iBehave Network, sponsored by the Ministry of Culture and Science of the State of North Rhine-Westphalia and received funding from the National Ataxia Foundation (NAF). She has received consultancy honoraria from Vico therapeutics and Biogen, travel support from NAF, FARA, Euro-Ataxia and AGI and participated in advisory boards for Vico. SBoe received consulting fees from Biogen and Biohaven, honoraria from Ipsen, Abbvie, Merz Pharma and participated on advisory boards for Vico Therapeutics, Biogen and Biohaven. EI received honoraria from Biogen and Merz. JS received research support from Biogen, Lilly, and Eisai, consulting fees from Biogen, Reata, Lilly ans Eisai, honoraria from Biogen, Lilly and Eisai, and travel support from Lilly, Biogen, and Eisai. He is Speaker German Network of Memory Clinics and the Commission \u201cDementia\u201d of the German Society of Neurology. KR received research support from Friedreich\u2019s Ataxia Research Alliance (FARA); Interdisciplinary Center for Clinical Research within the Faculty of Medicine at the RWTH Aachen University, Germany (OC2). TK received research support from Servier, UCB, Biogen, and the German Ministry of Research and Consulting Fees from Arrowhead, Bristol-Myer Squibb and UCB. MGE received research support from the National Ataxia Foundation and Ataxia UK, honoraria from Biogen, and travel support from Aparito. All unrelated to this study. BM received research support from the German Federal Joint Committee (G-BA), the German Ministry of Research, the Worch Foundation, the EuroQol Research Foundation and Biogen, and Consulting Fees from Biogen, the EuroQol Research Foundation and Lilly. AD received research support from the National Institute of Health (U01 NS104326), from ANR PROFA, ANR Cortex, Servier, Mavelife, Enroll (CHDI), Vico therapeutics, ASKIBO, and PTC therapeutics, and conculting fees from Biogen, UCB and HUNTIX. She participated in Boards for HUNTIX, Biogen and FRM, holds shares in patent B 06291873.5 and is president of the Soci\u00e9t\u00e9 Francophone de Neurog\u00e9netique. SBor received consulting fees from Biogen, unrelated to this study. All other authors declare no conflicts of interest.","order":2,"name":"Ethics","label":"Competing Interests","group":{"name":"EthicsHeading","label":"Declarations"}}],"article-number":"85"}}