Patient-reported, Health Economic and Psychosocial Outcomes in Friedreich Ataxia
Status: Recruiting
Location: See all (6) locations...
Study Type: Observational
SUMMARY
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.
Eligibility
Participation Requirements
Sex: All
Minimum Age: 12
Healthy Volunteers: f
View:
• FA confirmed by molecular genetic testing
• Ataxia severity of ≤30 points according to the Scale of the Assessment and Rating of Ataxia (SARA)
• Access to a smartphone or tablet and able to operate the device
• Older than 12 years
Locations
Other Locations
Austria
Klinik für Neurologie, Medizinische Universität Innsbruck
RECRUITING
Innsbruck
France
Paris Brain Institute
RECRUITING
Paris
Germany
Department of Neurology, RWTH Aachen University
RECRUITING
Aachen
German Center for Neuro-degenerative Diseases (DZNE)
RECRUITING
Bonn
Friedrich-Baur-Institut an der Neurologischen Klinik und Poliklinik
RECRUITING
Münich
Neurologische Klinik und Hertie-Institut für Klinische Hirnforschung, Universitätsklinik Tübingen