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FACOMS: Friedreich's Ataxia Clinical Outcome Measures

About this study

This is a long-term study to help scientists learn more about Friedreich’s ataxia (FA). Friedreich’s ataxia is a rare neurological disorder that affects movement. This study follows people living with FA over time and tracks different aspects of the disease.

This study takes place in many locations, and some of those treat adults. St. Jude focuses on children and young adults. If you choose to enroll in FACOMS, you are seen once a year at St. Jude. At this visit you complete various physical exams and testing. You may also donate tissue samples like blood and a cheek swab for research testing.

The purpose of the study is to gather data on those with Friedreich’s ataxia and create a clinical research network. This study also seeks to develop tests, such as timed walking tests and vision tests, that could be used in future clinical trials for this disorder.

Eligibility overview

  • Patients with Friedreich’s ataxia
  • Birth to 22 years
  • Parental permission and, if appropriate, child assent

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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 Clinical Outcome Measures Study

Study goal:

To better understand how Friedreich’s ataxia progresses and to develop tests that can be used in other clinical trials to measure changes in the disease over time.

Diagnosis:

Friedreich's ataxia

Age:

Birth to 22 years old

Clinical trials categories:

Neurological Disorders Friedreich’s Ataxia Genetic Syndromes

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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