Clinical Research Directory
Browse clinical research sites, groups, and studies.
Patient-reported, Health Economic and Psychosocial Outcomes in Friedreich Ataxia
Sponsor: German Center for Neurodegenerative Diseases (DZNE)
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.
Key Details
Gender
All
Age Range
12 Years - Any
Study Type
OBSERVATIONAL
Enrollment
200
Start Date
2023-06-01
Completion Date
2028-12-31
Last Updated
2026-04-01
Healthy Volunteers
No
Conditions
Locations (6)
Klinik für Neurologie, Medizinische Universität Innsbruck
Innsbruck, Austria
Paris Brain Institute
Paris, France
Department of Neurology, RWTH Aachen University
Aachen, Germany
German Center for Neuro-degenerative Diseases (DZNE)
Bonn, Germany
Friedrich-Baur-Institut an der Neurologischen Klinik und Poliklinik
Münich, Germany
Neurologische Klinik und Hertie-Institut für Klinische Hirnforschung, Universitätsklinik Tübingen
Tübingen, Germany