Title of Study: The Friedreich's Ataxia Health Index Study
Principal Investigator: Chad Heatwole, MD, MS-CI
Institutional Affiliation: University of Rochester, Department of Neurology
Study Description: This study aims to identify the symptoms that have the greatest impact on quality-of-life for individuals with FA. The results of the study will help guide future research involving FA patients through the development of a patient-reported measure of health.
The study involves completing a survey to include questions on demographics and symptoms of FA.
WHO CAN PARTICIPATE?
- U.S. residents
- Participants with a confirmed diagnosis of FA
- Adults, ages 18 or older
- Children, ages 8-17, with parental consent; if the child is age 13-17, only the child should complete the survey
- Parents of children age 0-12; both parent and child can complete the survey for children ages 8-12.
Please see this Recruitment flyer to access the survey links.