For People with Friedreich's Ataxia

For People with Friedreich's Ataxia

Taking part in research as a patient is a wonderful way to bring us ever closer to finding a cure for ataxia. Below is a list of current research trials and projects that are recruiting for patients with FA.

Yanita was diagnosed with FA in her 20s and took part in the Omaveloxolone clinical trial in the UK.   

“I’m so glad I could take part in the trial and be part of the research for a drug that is now approved by the FDA,” Yanita shared.   

CLINICAL TRIALS

Trial to test the Exopulse Mollii electrostimulation suit in ataxias (Added March 2026) - This trial will be run by Dr Lisa Bunn at the University of Plymouth and is for adults and children over the age of 4 with any confirmed genetic or inherited cerebellar ataxia. The researchers will look at whether wearing the Exopulse Mollii suit in the home environment for 4 weeks can improve motor function, balance, coordination, and quality of life in ataxias. Participants will be randomly assigned to either wear a working version of the suit or a 'sham' non-working version of the suit.

ONLINE STUDIES/ SURVEYS

Exploring identity in people with hereditary ataxias (Added October 2026) - This study, led by a researcher at the University of Southampton, involves an an online interview to explore how a diagnosis of a hereditary ataxia impacts sense of identity in young adults with any hereditary ataxia, aged, 18-35. If you find answering these questions upsetting in any way then please discuss this with a healthcare professional, someone in your support network, or contact the Ataxia UK helpline (Mon-Fri 10:30-14:30 on 0800 995 6037 or email help@ataxia.org.uk).

IN PERSON STUDIES

A project testing brain stimulation in people with ataxia (Added Oct 2026) - Dr Tim West, neuroscientist, is leading a study based at the Institute of Neurology, University College London. His team is developing a non-invasive form of brain stimulation that targets the part of the brain that coordinates movement, the cerebellum. The long-term aim is a personalised treatment for ataxia using neurostimulation. The study is now under way, and Dr West is looking for adults with ataxia whose symptoms mainly affect coordination, balance and speech to take part and Ataxia UK is supporting Dr West with recruitment.

NATURAL HISTORY STUDIES

Natural history study in Friedreich's ataxia (EFACTS) (Added Nov 2020)

APPS AND WEBSITES 

The FA app - The FA app, developed by the charity End FA, is an app which aims to connect with and empower all people with Friedreich’s ataxia (FA) worldwide. The objectives of the app are to connect people with FA with researchers running clinical and virtual research trials, to empower people with FA with useful tools for managing their life and treatment, and to educate people by sharing the latest FA news.