Observing How Friedreich Ataxia Progresses Over Time in Patients
Follows people with Friedreich ataxia over time to study how the disease changes.
Plain-language title generated from the registry record
Registry title: Friedreich Ataxia Global Clinical Consortium UNIFIED Natural History Study
Key facts
- Where
- Parkville, AustraliaSee the site
Where in Australia
- Murdoch Childrens Research InstituteParkville, AustraliaTaking people
Questions to ask the study team
- How often do I need to come in, and for how long each time?
- Are travel costs paid?
- Can I keep my own doctor?
- What happens if I want to stop?
Trial details
- Who runs it
- Friedreich's Ataxia Research Alliance
- Trial code
- NCT06016946
- Record updated
- 1 September 2026
- Original description
This project is a global, multicenter, prospective, longitudinal, observational natural history study that can be used to understand the disease progression and support the development of safe and effective drugs and biological products for Friedreich ataxia.Read full original descriptionShow less
Friedreich Ataxia Global Clinical Consortium UNIFIED Natural History Study
This project is a global, multicenter, prospective, longitudinal, observational natural history study that can be used to understand the disease progression and support the development of safe and effective drugs and biological products for Friedreich ataxia.
Inclusion: Both males and females of any age; Individuals with Friedreich ataxia (FA): Participants that meet genetically confirmed diagnosis of Friedreich ataxia; Written informed consent provided; Informed consent must be obtained for all participants; For underage participants, they and the parent/ legally authorized representative have to sign the informed consent form, child assent (if applicable); Persons who are not legally competent require the informed consent of their legally authorized representative.
Exclusion: Acute or ongoing medical or other conditions that would interfere with the conduct and assessments of the study; Unable or unwilling to provide informed consent; For any reason in the opinion of the investigator, participant would be unlikely or unable to comply with study protocol requirements.