Wearable technology for Friedreich’s ataxia - Ataxia UK

Wearable technology for Friedreich’s ataxia

Post Published: January 23, 2023

Exciting research from two ground-breaking studies shows the power of wearable technology and artificial intelligence in monitoring movement disorders, including Friedreich’s ataxia (FA)

Researchers have used a wearable tool to gather vast amounts of information on movement, and how movement is affected in FA. By combining human movement data with artificial intelligence technology, they hope to significantly impact the future of clinical trials for rare conditions like FA.

The two proof-of-concept research papers, using this technology in FA and Duchenne muscular dystrophy (DMD) were published in the journal Nature Medicine.

Tracking progression of FA is normally done using ataxia rating scales, where a doctor carries out a range of tests to assess the FA symptoms. This new technology has the potential to provide a much more precise assessment of movement.

In the FA study, researchers at the Ataxia UK-accredited London Ataxia Centre worked with researchers at Imperial College London and the MRC London Institute of Medical Sciences to measure movement patterns in people with FA. They compared data gathered using the wearable technology with data gathered from ataxia rating scales and functional tests. The new technology showed more sensitivity in predicting the progression of FA than the traditional rating scales and functional tests. Moreover, the researchers were able to accurately predict the differing levels of frataxin in each patient, without taking biological samples (frataxin is the protein which is reduced in FA). The standard clinical assessments were not able to predict frataxin level.

Using this technology, fewer patients will be needed for clinical trials, as the results will be much more accurate. This is particularly important for rare conditions like FA, where finding enough people for a large trial can be a challenge.

This is a proof-of-concept study, and more work is needed before this technology can be implemented in the clinic.

Professor Paola Giunti, co-author and Head of the NHNN/UCL Ataxia Centre, thanked patients at the London Ataxia Centre that took part in the study: “The large number of FA patients who were very well characterised both clinically and genetically at the Ataxia Centre UCL Queen Square Institute of Neurology in addition to our crucial input on the clinical protocol has made the project possible. We are also grateful to all our patients who participated in this project.”

The London Ataxia Centre is one of the sites for the European FA natural history study called EFACTS. Thorough characterisation of over 300 participants in the EFACTS project was crucial to the success of this study. Dr Suran Nethisinghe, co-author and researcher at the London Ataxia Centre, said: “This is a very rare condition, but the Ataxia Centre participated in a natural history study clinically and genetically characterising more than 300 patients, which enabled us to select a very homogenous group of ambulatory patients to validate the sensor and AI tool. This was essential to the success of the study, which will have huge implications for future clinical trials.”

Co-author of both studies Professor Richard Festenstein was interviewed over the weekend, along with Friend of Ataxia UK, Yanita. Professor Festenstein said “It was great to be able to talk about our work using motion capture to measure progression in Friedreich’s ataxia to a wide audience. It was especially great to be interviewed with Yanita who was excellent at presenting the patient perspective.”

This work was a large collaboration involving researchers across multiple topics, and really highlights the importance of working together to address issues for research into rare conditions.

This story has been covered in the press. See more at the links below:

BBC News article

UCL press release

Imperial press release

The two research articles: FA and DMD



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