Friedreich Ataxia is a rare disease that affects the brain and heart, due to a problem in the frataxin (FXN) gene. The UNIFAI Study is a global research effort to help understand this disease better and develop new treatments. The study is called observational, meaning researchers will watch and record what happens naturally over time without changing anything. It will take place in many centers around the world and includes yearly visits for up to 25 years. Patients with Friedreich Ataxia will have exams and tests to track the disease's progress. This study combines two former studies to collect a lot of data, helping scientists find patterns and test new drugs.
- Study involves annual visits for up to 25 years.
- Participants will have exams like walking tests and health questionnaires.
- Data helps to develop better treatments and understand the disease.
To join, you must have Friedreich Ataxia confirmed by a genetic test, and consent (permission) is necessary. The study is open to all ages. You cannot join if you cannot give consent or have other medical problems that interfere with the study.