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LEOPARD-FA: Longitudinal Endpoint Optimization to Provide an Assessment of Relevant Drugs in Friedreich’s Ataxia

LEOPARD-FA is a research study that is being conducted by Dr. Chad Heatwole from the University of Rochester Department of Neurology in Rochester, New York, in the United States. This study utilizes surveys, so no office visits are required.

The purpose of this study is to assess the ability of two new surveys to:

  1. Measure patient-relevant changes in disease burden over time
    FA-HI (Friedreich Ataxia-Health Index)
  2. Measure caregiver-reported changes in disease burden over time
    FACR-HI (Friedreich Ataxia Caregiver Reported-Health Index)
This study will take place over the course of 18 months. If you decide to participate, you will complete 4 surveys at baseline, 6 months, 12 months, and 18 months. You will be asked to complete demographic information about yourself and answer questions about your FA symptomatic burden, your overall changes in health over time, and your preferences with using the surveys administered throughout this study. The surveys you will take at each time point will take about 40 minutes or less, in total, to complete.

Who can participate:

  • Individuals with FA ages 8 and older
  • Individuals who are caregivers, ages 18 or older, for individuals, ages 5-18, with FA.
Adults will be asked to read an information letter and provide their consent online to participate.

Minors, ages 8-17 will be asked to read an information letter, and their parent/guardian will also be asked to read an information letter. The parent/guardian must provide permission and the minor must provide assent online to participate. The parent/guardian may also need to help the minor in understanding and/or answering survey questions. The parent/guardian may choose to additionally participate in the caregiver study, in which the purpose is to assess the Friedreich’s Ataxia Caregiver-Health Index (FACR-HI).

How to participate:

Individuals with FA ages 18 and older may click the link here to get started: FA-HI survey

Parents/guardians of individuals with FA ages 5-18 may click the link here to get started: FACR-HI survey

Watch the FARA Minutes of Science video on the LEOPARD-FA study here

Watch Anika Varma present in the FARA Flash Talk series on the LEOPARD-FA study here


Any questions or comments can be directed to the study coordinator:
Anika Varma
510-556-6513
anika.varma@chet.rochester.edu


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