Folia Health today announced a collaboration with argenx to launch a first-of-its-kind, at-home observational real-world evidence initiative supporting individuals living with chronic inflammatory demyelinating polyradiculoneuropathy (CIDP).
The study represents the first real-world data program designed to capture the at-home experiences of individuals with CIDP and their caregivers. Designed in partnership with patients and caregivers, the initiative leverages Folia’s home-reported outcomes (HROs) platform, enabling participants to select and track the symptoms that matter most to them while documenting their individualized treatment plans. Over time, the platform captures symptom severity, treatment utilization, and other aspects of daily disease management directly from patients over an initial six-month period.
“Our team at Folia shows up to work every day to translate the lived experience of patients into research-grade data that can be used to inform the therapies available to help people. With our partners at argenx, we are very motivated to be able to describe the diverse experiences of people living with CIDP, including difficulties with nerve pain and symptom flare ups. We hope that this work will pave the way for care plans that enable people with CIDP and their caregivers to achieve a better quality of life with less interference from their disease.” said Nell Meosky Luo, the CEO & Founder of Folia Health.
HROs tracked by patients and caregivers provide a continuous view of what happens between clinic visits, overlaying tracked symptoms and treatments with real-world quality-of-life impacts such as the ability to work, engage in everyday activities, and navigate life independently. Through the Folia platform, CIDP patients and caregivers can actively engage with their own study data and gain deeper insights into their symptom burden, treatment effects, and acute health events.
The Folia app generates tracking summary reports that let patients easily visualize changes over time, including symptom severity trends, flare frequency, and treatment responses. Calendar filtering tools further enable patients to see when symptoms, flares, and other health events occur, which may help them identify patterns and understand how treatments may influence daily life. The platform can overlay treatment usage with symptom severity, and patients can export visual reports to share meaningful insights with their care teams.
Learn more and sign up to participate in the study here: https://www.foliahealth.com/cidp-study.
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