The PROFA study is an international, multi-centric observational and validation study to assess the patient-reported, psychosocial and economic outcomes of patients with Friedreich Ataxia (FA). Eligible patients will be recruited from six study centers in Germany, Austria and France. Patients will complete a baseline assessment via face-to-face interviews at the study centers and multiple momentary follow-up assessments via a mobile-health app at home daily to monthly for six months. Study results will gain essential and in-depth insights into the daily life of patients with FA.
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Usability of the mobile-health app as a remote monitoring momentary data assessment tool
Timeframe: Six months
Acceptability of the mobile-health app as a remote monitoring momentary data assessment tool
Timeframe: Month 6
Total societal costs
Timeframe: Six months
Health-related quality of life
Timeframe: Month 1
Health-related quality of life
Timeframe: Month 3
Health-related quality of life
Timeframe: Month 5
Health-related quality of life
Timeframe: Month 6
Psychosocial health due to communication handicaps caused by speech and hearing disabilities
Timeframe: Month 1
Psychosocial health due to communication handicaps caused by speech and hearing disabilities
Timeframe: Month 2
Psychosocial health due to communication handicaps caused by speech and hearing disabilities
Timeframe: Month 3
Psychosocial health due to communication handicaps caused by speech and hearing disabilities
Timeframe: Month 4
Psychosocial health due to communication handicaps caused by speech and hearing disabilities
Timeframe: Month 5
Psychosocial health due to communication handicaps caused by speech and hearing disabilities
Timeframe: Month 6
Fluctuation of health-related quality of life
Timeframe: Day one, two and three in months 1
Fluctuation of health-related quality of life
Timeframe: Day one, two and three in months 3
Fluctuation of health-related quality of life
Timeframe: Day one, two and three in months 5
Fluctuation of health-related quality of life
Timeframe: Day one, two and three in months 6