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Recruiting

UNIFAI: A Natural History Study of Friedreich’s Ataxia

About this study

Friedreich's ataxia (FA) is a rare, inherited disease that affects the nerves, spinal cord, and cerebellum of the brain. This disease causes a slow, steady loss of muscle movement and balance (ataxia), speech problems, loss of feeling, and may affect heart function.

The UNIFAI study follows people living with FA over time. We want to better understand how FA affects your body, what symptoms you have, and how your symptoms change. You will have tests once a year until the end of the study. We will do tests such as:

  • Neurological exams
  • Vision tests
  • Hearing tests
  • Walking tests
  • Balance tests

We will also ask you questions about how FA affects your daily life.

Eligibility overview

  • Genetic diagnosis of Friedreich’s ataxia
  • Ages 21 and younger
  • Parental permission and child assent
  • Healthy volunteers may be accepted

The above information is intended to provide only a basic description about a research protocol that may be currently active at St. Jude. The details made available here may not be the most up-to-date information on protocols used by St. Jude. To receive full details about a protocol and its status and or use at St. Jude, a physician must contact St. Jude directly.

Overview

Full title:

Friedreich’s Ataxia Global Clinical Consortium UNIFIED Natural History Study (UNIFAI)

Study goal:

To collect data about how Friedreich’s ataxia progresses over time and affects the daily life of patients.

Age:

Any

For physicians and researchers

Patients accepted to St. Jude must be referred by a physician or other qualified medical professional. Learn how St. Jude can partner with you to care for your patient.

 

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