STEP OUT FA v1.0
Research type
Research Study
Full title
Fusion of therapeutic AI active gaming with motion capture to create a novel digital clinical outcome assessment (dCOA) in Friedreich Ataxia.
IRAS ID
364818
Contact name
Helen Dawes
Contact email
Sponsor organisation
University of Exeter
Duration of Study in the UK
0 years, 3 months, 30 days
Research summary
Friedreich Ataxia (FA) is a rare, inherited condition that usually begins in childhood or early adulthood. It affects the nerves and other parts of the body, causing increasing problems with balance, coordination, and walking. Over time, many people with FA lose the ability to walk independently. Because these movement difficulties have the biggest impact on daily life, patients and families say they are the most important areas to target with new treatments.
However, current tools used in drug trials to measure changes in FA are not working well. Many trials have not shown improvements, even when the treatments looked promising in early research. One reason is that the tests used are often slow to change, difficult to interpret, or do not feel relevant to everyday activities. Patients also find them tiring and repetitive.
This study aims to develop a new, more meaningful way to measure movement in FA using virtual‑reality (VR) games. These games are designed specifically for people with FA and use a laptop camera and advanced motion‑analysis technology to track movement accurately. The games can be tailored to different ages, abilities, and interests, making them more enjoyable and motivating. By involving both people with and without FA, the study will test whether this new digital approach is accurate, reliable, and useful for future clinical trials.
The study will be carried out at the University of Exeter and in participant homes. To check how accurate the approach is in a laboratory, both people with and without FA will complete active gaming tasks and complete questionnaires. They will also have brain activity and heart rate changes measured, along with how their body moves and their coordination. People with FA will continue the tasks at home for 12 weeks, then have clinical assessments repeated and be interviewed about their thoughts on the gaming tasks.REC name
London - Surrey Research Ethics Committee
REC reference
26/PR/0700
Date of REC Opinion
29 Jun 2026
REC opinion
Further Information Favourable Opinion