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Study identifier: NCT05943002 Synced from ClinicalTrials.gov · July 28, 2026
● Recruiting

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

Condition: Friedreich Ataxia  ·  Sponsor: German Center for Neurodegenerative Diseases (DZNE)

PhaseN/A
Planned participants200
Who can joinAll sexes, 12 Years to no upper limit
Healthy volunteersNo

About this study

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.

This description comes directly from the study's public registry record.

Talk to the study team

Bernhard Michalowsky, PD Dr.  ·  +49 3834 868530  ·  bernhard.michalowsky@dzne.de

Maresa Buchholz, Dr.  ·  +49 3834 868534  ·  maresa.buchholz@dzne.de

Always discuss trial participation with your own doctor first.

Locations (6)

Klinik für Neurologie, Medizinische Universität InnsbruckInnsbruck, AustriaRecruiting
Paris Brain InstituteParis, FranceRecruiting
Department of Neurology, RWTH Aachen UniversityAachen, GermanyRecruiting
German Center for Neuro-degenerative Diseases (DZNE)Bonn, GermanyRecruiting
Friedrich-Baur-Institut an der Neurologischen Klinik und PoliklinikMünich, GermanyRecruiting
Neurologische Klinik und Hertie-Institut für Klinische Hirnforschung, Universitätsklinik TübingenTübingen, GermanyNot Yet Recruiting

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Source record: clinicaltrials.gov/study/NCT05943002