New study tracks Real-Life impact of friedreich ataxia via smartphone app
NCT ID NCT05943002
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.
Disclaimer
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This is a summary of
the original study
.
Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.
This is a summary of the original study . Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.
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Conditions
The condition(s) this trial relates to.
As listed by the trial registrant
The condition terms exactly as the trial's registrant entered them.
Contacts and locations
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Study contacts
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Contact
Phone: •••-•••-•••• Email: •••••@•••••
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Contact
Phone: •••-•••-•••• Email: •••••@•••••
Locations
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Department of Neurology, RWTH Aachen University
RECRUITINGAachen, 52074, Germany
Contact Email: •••••@•••••
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Friedrich-Baur-Institut an der Neurologischen Klinik und Poliklinik
RECRUITINGMünich, 80336, Germany
Contact Email: •••••@•••••
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German Center for Neuro-degenerative Diseases (DZNE)
RECRUITINGBonn, 53127, Germany
Contact Email: •••••@•••••
Contact
Contact Email: •••••@•••••
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Klinik für Neurologie, Medizinische Universität Innsbruck
RECRUITINGInnsbruck, 6020, Austria
Contact Email: •••••@•••••
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Neurologische Klinik und Hertie-Institut für Klinische Hirnforschung, Universitätsklinik Tübingen
NOT_YET_RECRUITINGTübingen, 72076, Germany
Contact Email: •••••@•••••
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Paris Brain Institute
RECRUITINGParis, 75013, France
Contact Email: •••••@•••••
Contact Email: •••••@•••••
Contact