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    • #18005
      Katie Griffith
      Keymaster

      I recently learned of a study geared towards caregivers of minors with FA. It is from the University of Rochester but can be done remotely. I don’t qualify since my son is 20, but if you do participate, please update the forum with your perspective on it! I’ll attach the info below:

      “PHASE 3:

      What: The purpose of this study is to develop and validate a disease-specific, caregiver reported outcome measure for clinical trials of pediatric FA patients. This study is being conducted by Dr. Chad Heatwole from the University of Rochester in conjunction with the Friedreich’s Ataxia Research Alliance (FARA). This study involves completing an online survey and participating in a phone interview. The survey will take approximately 20 minutes to complete and will ask some personal questions about your child, your household, and how the disease affects your child’s quality of life physically, mentally, and emotionally. The interview will take approximately 60 minutes to complete and will discuss how easy it was to complete the survey, how understandable the questions are, the format of the survey, and what some of the questions mean to you.

      Who can participate: Adult caregivers of pediatric FA patients ages 0 to 18 years.

      How to participate: Interested participants can reach out to Anika Varma, at 510-556-6513 or email [email protected] . Any questions or comments can be directed to this phone/email.”

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