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

NCT05943002 · Status: RECRUITING · Type: OBSERVATIONAL · Enrollment: 200

Last updated 2026-04-01

No results posted yet for this study

Summary

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

  • Friedreich Ataxia

Sponsors & Collaborators

  • McMaster University

    collaborator OTHER

  • Sorbonne University

    collaborator OTHER

  • German Center for Neurodegenerative Diseases (DZNE)

    lead OTHER

Principal Investigators

  • Bernhard Michalowsky, PD Dr. · German Center for Neurodegenerative Diseases (DZNE) Rostock/ Greifswald, Germany

Eligibility

Min Age
12 Years
Sex
ALL
Healthy Volunteers
No

Timeline & Regulatory

Start
2023-06-01
Primary Completion
2028-06-30
Completion
2028-12-31

Countries

  • Austria
  • France
  • Germany

Study Locations

More Related Trials

Entities

Companies

Read the full study record

This page highlights key information. For complete eligibility criteria, study locations, investigator contacts, and the full protocol, visit the original record on ClinicalTrials.gov.

View NCT05943002 on ClinicalTrials.gov