Software Engineer

Folia Health has launched an app-based observational study in collaboration with argenx to capture real-world evidence from patients with chronic inflammatory demyelinating polyradiculoneuropathy (CIDP) and their caregivers. The initiative represents the first real-world data programme designed to track at-home experiences of individuals living with the condition. The study uses Folia's home-reported outcomes platform, allowing participants to select and monitor symptoms that matter most to them whilst documenting treatment plans over an initial six-month period. The platform tracks symptom severity, treatment utilisation and daily disease management aspects. Boston-based Folia Health, founded in 2016, specialises in transforming patient experiences into structured data insights. The company works across chronic and rare conditions to generate clinical-grade real-world evidence whilst maintaining data privacy and patient autonomy.

Folia Health launches app-based study to unlock novel real-world evidence of symptom burden and unmet need for patients and caregivers in CIDP. April 07, 2026 10:00 ET | Source: Folia Health BOSTON, April 07, 2026 (GLOBE NEWSWIRE) - 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). "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..." 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. About Folia Health: Folia Health is a patient-led health company and the pioneer of home-reported outcomes (HROs), transforming lived health experiences into valuable structured data insights to advance research and personalized care. The company's platform is built on the belief that the knowledge of patients and caregivers is the missing piece to enable precise, individualized care and high-impact research. Through a useful platform, radical transparency, explicit consent protocols, and data dividend payments, Folia bridges the gap between patients, clinicians, and researchers while maintaining the highest standards of data privacy and patient autonomy. Founded in 2016 by family caregivers and based in Boston, Folia works with individuals across chronic and rare conditions to generate clinical-grade real-world evidence. For more information, visit www.foliahealth.com. Folia Health Contact: Matt Berry Director of Marketing [email protected]