This is a 4-year study to learn more about heart disease in people with Friedreich’s Ataxia (FA) and their family members. This will help us understand how to better identify and treat heart disease in this group of people.
Anyone considering participating in a clinical trial should discuss the matter with their physician. FARA does not endorse or recommend any particular studies.
Study Details:
To take part, you must:
- Be 16 years or older.
- Have a history of FA and 2 family members that are FA carriers (parents or sibling)
Participation includes:
- Yearly visits in which we will take vital signs, perform a physical exam, and provide a questionnaire about your medical health.
- Heart testing (electrocardiogram, echocardiogram, cardiac MRI, and Holter rhythm monitor)
- Genetic testing and bloodwork for biomarkers of heart conditions
- Enrollment into larger FA-HD program
Travel reimbursement will be provided to study participants.