EverythingALS, a technology- and data-focused nonprofit, has launched an app to support people living with amyotrophic lateral sclerosis (ALS), their families and caregivers, researchers, and health-care professionals.
In a late August news release, Seattle-based EverythingALS said the new app, compatible with iOS and Android devices, “represents a significant upgrade from the previous version, which was designed exclusively for observational study research participants. The new EverythingALS app not only retains its research capabilities, but also expands to serve the broader ALS community with enhanced features and services.”
The new Pathfinders feature was created to connect people newly diagnosed with ALS to “experienced guides from the community,” the organization said. “Pathfinders are here to help patients navigate the complexities of their diagnosis and offer guidance and support as they embark on their journey.”
A new generative AI-supported chat feature can “provide timely and accurate answers to common questions regarding ongoing clinical trials, observational studies, and other crucial aspects of ALS care.”
Research remains a key component of the app, the organization added: “The app introduces a centralized consent flow that offers users a variety of experiences for participating in different studies. This includes multimodal observation, speech analysis, specific clinical studies, and tracking of diet and daily activities.”
The feature will enable app users to conveniently and easily contribute to ongoing ALS research. And the app is being rolled out as a support tool in partnership “with various ALS Centers of Excellence,” the announcement said. “With the consent of participants, data collected through the app will be anonymized and shared with companies dedicated to researching and developing new therapies for ALS.
“We invite everyone in the ALS community, from newly diagnosed individuals to long-term patients and caregivers, to explore the new features and benefits of this comprehensive app.”
