Patient-reported, Health Economic and Psychosocial Outcomes in Friedreich Ataxia

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.

NCT Number	NCT05943002
Lead Sponsor	German Center for Neurodegenerative Diseases (DZNE) Collaborators: McMaster University, Sorbonne University
Conditions	Friedreich Ataxia
Enrollment	200 participants
Start Date	2023-06-01
Primary Completion	2028-06-30 (estimated)
Study Completion	2028-12-31 (estimated)
Updated on ClinicalTrials.gov	2026-04-01