Actively Recruiting
Patient-reported, Health Economic and Psychosocial Outcomes in Friedreich Ataxia
Led by German Center for Neurodegenerative Diseases (DZNE) · Updated on 2026-04-01
200
Participants Needed
6
Research Sites
291 weeks
Total Duration
On this page
Sponsors
G
German Center for Neurodegenerative Diseases (DZNE)
Lead Sponsor
M
McMaster University
Collaborating Sponsor
AI-Summary
What this Trial Is About
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.
CONDITIONS
Official Title
Patient-reported, Health Economic and Psychosocial Outcomes in Friedreich Ataxia
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Friedreich Ataxia confirmed by molecular genetic testing
- Ataxia severity of 30 points or less according to the Scale of the Assessment and Rating of Ataxia (SARA)
- Access to a smartphone or tablet and able to operate the device
- Older than 12 years
You will not qualify if you...
- Unable to give consent
- Ataxia severity greater than 30 according to the Scale of the Assessment and Rating of Ataxia (SARA)
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Trial Site Locations
Total: 6 locations
1
Klinik für Neurologie, Medizinische Universität Innsbruck
Innsbruck, Austria, 6020
Actively Recruiting
2
Paris Brain Institute
Paris, France, 75013
Actively Recruiting
3
Department of Neurology, RWTH Aachen University
Aachen, Germany, 52074
Actively Recruiting
4
German Center for Neuro-degenerative Diseases (DZNE)
Bonn, Germany, 53127
Actively Recruiting
5
Friedrich-Baur-Institut an der Neurologischen Klinik und Poliklinik
Münich, Germany, 80336
Actively Recruiting
6
Neurologische Klinik und Hertie-Institut für Klinische Hirnforschung, Universitätsklinik Tübingen
Tübingen, Germany, 72076
Not Yet Recruiting
Research Team
B
Bernhard Michalowsky, PD Dr.
CONTACT
M
Maresa Buchholz, Dr.
CONTACT
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
0
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