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.
Survey on impacts of FA on daily life and overall health - A new study is recruiting participants, which aims to understand how Friedreich’s ataxia (FA) impacts your daily life and overall health. Taking part involves completing a 30-minute survey. If you are aged 12 or over and have FA, or provide care for someone with FA, you can take part.
FA balance and gait study - a study using wearable technology to investigate the impacts of Friedreich's ataxia on balance and gait, both in the laboratory setting and in real-world settings such as the home
Natural history study in Friedreich's ataxia (EFACTS)
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.
Friedreich's ataxia Global Patient Registry (FAGPR)
On 23 June 2020 we held a webinar describing more about the FA Global Patient Registry. You can view a recording of the webinar here:
