Participants are needed for a research study to test body-worn sensors to measure movement during simple tests of coordination. The goal of this study is to evaluate progression and severity of ataxia.The outcomes of this study are critical for allowing remote data collection during future clinical trials.
Eligibility criteria include:
- Early-onset participants - 12-30 years of age with FA-onset between age 5-25
- Late-onset participants - 26-60 years of age with FA-onset between age 25-40
- Be able to walk 10-yards independently, without an assistive device.
- Be able to sit and stand unassisted for at least 30 seconds.
- Participants can be involved in an investigational drug trial and still be eligible for the IDEA study.
The study involves visits every 6 months over 2 years at a clinic site. Involvement in the study provides an Apple watch.
Compensation is available for travel to study sites.
Participants are needed at all study sites in Baltimore (Johns Hopkins), Boston (MGH), Chicago (University of Chicago), Los Angeles (UCLA) or Portland (Oregon Health & Science University).
For additional eligibility criteria, please contact the site study coordinator:
University of Chicago
Study coordinator: Hannah Casey
Email:
Phone: (773) 702-4610
Oregon Health & Sciences University
Study coordinator: Austin Prewitt
Email:
Johns Hopkins Medical Institute
Study coordinator: Michelle Joyce
Email:
Massachusetts General Hospital
Study coordinator: Brigitte Jacoby
Email:
UCLA
Study coordinator: Aaron Fisher
Email:
Anyone considering participating in a clinical trial should discuss the matter with his or her physician. FARA does not endorse or recommend any particular studies.
