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The Friedreich’s Ataxia Health Index Study (FA-HI)

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.


  • 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.



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