Friedreich’s Ataxia (FA or FRDA) is a debilitating neuro-muscular disorder for which there is currently no known cure. The FA App project is spearheaded by EndFA working closely with FARA (the Friedreich’s Ataxia Research Alliance), which has been pursuing treatments and a cure for over two decades.
To connect the disparate global FA community, the project brought in various advocacy groups and researchers from around the world. Based on the insight provided, STRV was able to design and build an app that is highly accessible, taking into account the many physical limitations that often come with the condition. The FA App also comes in nine languages and is structurally (and permanently) not-for-profit.
The goal of The FA App was to unite people affected by the condition globally, to empower and involve them in novel forms of virtual research.
We began with an in-depth Discovery Phase that sought to answer: How do we take an otherwise untappable scattered global community and unite it in one app, letting researchers do their work more efficiently and accelerating the progress towards a cure? How do we tailor the product to all stakeholders (researchers, advocacy organizations, individuals and families living with FA, and clinicians)?
As for specific challenges, we also set out to create an accessible app that keeps in mind FA symptoms such as hand tremors and coordination difficulties and vision/hearing loss; a seamless admin solution ideal for rapid sharing of information and gathering diverse feedback; and guaranteed data protection across all jurisdictions.
The STRV Solution
The Discovery Phase was largely about trying to understand the FA community (people with the condition and the medical researchers) through focus groups and interviews. People all over the world shared personal journeys, explained their needs, and played an incomparable role in helping us design and develop the product.
The FA App we know today includes two main parts. The first exists to facilitate a connection amongst community members and includes community features such as news and Q&As. The second part gives space to novel research projects, allowing FAers globally to enroll and participate in virtual research studies. The data from these studies flows to the commissioning researchers who are working on a cure.
The App includes an integration with a translation platform, comes with an impressive accessibility rating (a user can go through every user flow with fully limited sight) and the admin panel delivers functional design that simplifies content and user management, making admin/user interactions fast, organized and easy for both sides.
In terms of data protection, all design and implementation was done in full coordination with Data Protection Officers. Furthermore, a dedicated legal team coordinated legal responsibilities in all jurisdictions, ensuring The FA App met all requirements across the 190 countries in which The FA App is available. EndFA brought in an external security verification service to perform a penetration test of our product prior to launch, confirming the robustness of the STRV product and the overall process that was implemented to guarantee data protection.
What we’re perhaps proud of most is that, just days after its release and through word of mouth alone, the app was embraced by hundreds within the community. We have since prolonged our cooperation and are honored to be working on the FA App’s next stage, which includes implementing chat functionality, more robust virtual research possibilities and more.
“We are proud to be a partner with The FA App, as this new resource is a powerful tool for enabling global participation in research. It significantly accelerates the research by reducing the time to recruit individuals for trials and reduces burden for FAers by not requiring as many visits to specialty clinics to conduct the research.”