Friedreich's Ataxia Clinical Outcome Measures Study (FACOM)

The purpose of this study is to identify the most accurate tools which can be used to follow the disease progression in Friedreich’s Ataxia and be able to measure changes over a short period of time. Researchers anticipate that this study will result in reliable measurement tools to be used in future drug treatment research studies. The study is coordinated by Children’s Hospital of Philadelphia and is being conducted at multiple sites across the United States. Reimbursement for travel costs is available.

The study involves a yearly physical examination by a neurologist and an exam by the clinic coordinator. As part of the study, participants will undergo a vision test, measurements of hand function and coordination, and health and quality of life questionnaires. Information from tests such as ECG’s and echocardiograms will be collected.