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

BRAVE paediatric study of Omaveloxolone for FA (Added Jan 2026) - This phase 3 clinical trial looks at the effects and long-term safety of Omaveloxolone (SKYCLARYS) in children with FA aged 2 - 15 years. This trial is being run by Biogen. The London Ataxia Centre, Oxford Ataxia Centre and Sheffield Ataxia Centre are UK trial sites. The trial is now open for recruitment in the UK.

Sheffield Ataxia Centre contact: ​Dr Santosh Mordekar, santosh.mordekar@nhs.net ​

​London Ataxia Centre contact:​ Dr Shpresa Pula, shpresa.pula1@nhs.net 

Oxford Ataxia Centre contact: Prof Andrea Nemeth, andrea.nemeth@ndcn.ox.ac.uk. 

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 SURVEYS

FA care pathway survey (Added Oct 2025) - The purpose of this study is to gather the experiences of care of people with FA in the UK, in order to understand ataxia patients’ care pathways for the management of specific symptoms associated with FA. More specifically, this questionnaire aims to identify which aspects of FA management are most important to patients, including their perceptions of the quality of the medical care they receive for both FA progression and associated conditions. Anyone age 16 and above with a confirmed diagnosis of FA can take part. For people younger than 16, their parent or guardian can take part on their behalf.

IN-PERSON STUDIES

Augmented Reality-Based Closed-Loop Rehabilitation for Postural Instability in Ataxia (Added July 2025) - In-person study at Aston University, Birmingham. Anyone with a progressive ataxia including FA who is ambulant and aged 18+ can take part. Participants in the AR-based balance training study will visit Aston University twice weekly for 8–12 weeks, depending on their progression, with additional pre- and post-intervention assessment visits. Each session will last approximately 30 minutes.

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.