Longitudinal Analysis of Oral Communication in Friedreich's Ataxia

The ORFA research study will depend partly on the EFACTS consortium (European Friedreich's Ataxia Consortium for Translational Studies) in which the French center ICM participates since 2011 (principal investigator Pr Alexandra Durr). The clinical registry EFACTS has included 604 FA patients to date who are followed annually with the goal of collecting clinical and biological information via a database. In Paris, 50 FA patients are followed and receive a complete evaluation at each visit: clinical evaluations, blood test, cardiac evaluation, and neuropsychological evaluation. In addition, ORFA will be closely linked with the CERMOI project, entitled "Integrated functional evaluation of the cerebellum" which will study visual motor disturbances in FA. This project received funding in 2014 through the IHU-A-ICM, Institute of translational and neuroscientific research which includes 4 research teams at the ICM. CERMOI will combine clinical examination, recording of ocular movements, vestibular testing, gait and posture tests. ORFA will enable to assess the difficulties in articulation and hearing in FA patients and correlate this data with clinical and biological data collected in EFACTS. 50 francophone FA patients will be followed for 2 visits with a one-year interval in between.