A Patient-Reported Outcome Measure of Communication Difficulties in Friedreich Ataxia: COMATAX.
Maresa Buchholz·Stéphanie Borel·Claire Ewenczyk·Anna Heinzmann·Lucie Pierron·Sabrina Sayah·Rania Hilab·Mariana Atencio·Elodie Petit·Fanny Bertrand·Alix Vallancien·Chloé Diot·Stéphan Rouillon·Andreas Nadke·Katrin Feldmann·Vivian Maas·Jennifer Faber·Dorota Sarwinska·Sylvia Boesch·Elisabetta Indelicato·Almut T. Bischoff·Thomas Klopstock·Jörg B. Schulz·Kathrin Reetz·Zofia Fleszar·Arif Iskandar·Thomas Klockgether·Marcus Grobe-Einsler·Feng Xie·Brittany Humphries·Bernhard Michalowsky·Alexandra Durr·Victoire Monier
Abstract Background and Objectives: Friedreich ataxia (FA) causes progressive impairment of communication due to gradual deterioration of speech, associated with impaired hearing, socio-cognitive and language skills. There is an urgent need to investigate the impact of this multiparametric alteration on patients’ 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 an