New study tracks Real-Life impact of friedreich ataxia via smartphone app

NCT ID NCT05943002

Recruiting now Knowledge-focused Sponsor: German Center for Neurodegenerative Diseases (DZNE) Source: ClinicalTrials.gov ↗

First seen Jun 24, 2026 · Last updated Jun 27, 2026 · Updated 1 time

Summary

The PROFA study is an international observational study that follows 200 people with Friedreich Ataxia (FA) across Germany, Austria, and France. Participants use a mobile app to report their quality of life, symptoms, and healthcare costs daily for six months. The goal is to understand the real-world challenges of FA, not to test a new treatment.

What this could mean

Our plain-language read of the trial. This is informational only — not medical advice or a prediction.

What this could lead to: This study could reveal how Friedreich Ataxia truly affects daily life and finances, helping design better support and future treatments.
What could go wrong: This is an observational study, not a treatment trial. It won't test any drug or therapy, so it cannot directly improve symptoms or cure the disease.

This is an AI summary of the original study and may miss details. Read our disclaimer.

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Conditions

The condition(s) this trial relates to.

Friedreich ataxia

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

FRIEDREICH ATAXIA

Contacts and locations

Locations

Department of Neurology, RWTH Aachen University
RECRUITING

Aachen, 52074, Germany
Friedrich-Baur-Institut an der Neurologischen Klinik und Poliklinik
RECRUITING

Münich, 80336, Germany
German Center for Neuro-degenerative Diseases (DZNE)
RECRUITING

Bonn, 53127, Germany
Klinik für Neurologie, Medizinische Universität Innsbruck
RECRUITING

Innsbruck, 6020, Austria
Neurologische Klinik und Hertie-Institut für Klinische Hirnforschung, Universitätsklinik Tübingen
NOT_YET_RECRUITING

Tübingen, 72076, Germany
Paris Brain Institute
RECRUITING

Paris, 75013, France

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