EndFA’s Mobile App Aims to Unite FA Community, ‘Power the Cure’
With the mission to “Power the Cure!,” the FA App is designed to connect members of the FA community to each other and to researchers involved in clinical trials, and to educate people on this rare disorder’s symptoms, diagnosis, and treatments. It also provides patients and caregivers with tools to help them manage their daily lives, such as appointment trackers.
“Our mission is to connect and empower FAers worldwide so we can all participate meaningfully in finding a cure for FA,” EndFA states on the app’s website. “The FA App helps us do that.”
Through the app’s “Research” section, users can find information on active and enrolling clinical trials, including virtual studies that enable FA patients to participate from home, avoiding the challenge of finding transport to a clinical trial site.
Recruiting participants into clinical studies is a perennial bottleneck, slowing the progress of research efforts into better treatments and care. Virtual trials aim to streamline some of the research process, potentially involving more people in surveys and questionnaires than might be able to participate in person.
The Rare Diseases Clinical Research Network, for instance, conducted an online survey last year, investigating the effects of the global COVID-19 pandemic on people with rare diseases, their families, and caregivers.
App users may also provide feedback and suggestions to its developers through an in-app “Send Feedback” option.
User data is secured in accordance with U.S. and EU data protection laws, and EndFA states that the app was designed with “high security standards” evaluated by an outside testing organization. Data may be shared with researchers, and EndFA will share the results of any published research based on these data with the community.
EndFA noted on its webpage that it has no intent to monetize any data gathered via the app, or plans to fundraise through it.
In addition to FARA, several other organizations joined EndFA in launching the mobile application. These include Ataxia UK, FARA Australia, the Hellenic Friedreich’s Ataxia Association, ATAR, Ataxia de Friedreich Brasil, Associação Brasileira de Ataxias Hereditarias e Adquiridas, FARA Ireland, and FALA.