Folia Health and Novartis Pharmaceuticals, Inc. announced their collaboration on an at-home observational real-world evidence initiative supporting individuals with IgA nephropathy. This ground-breaking study will leverage Folia’s cutting-edge technology platform, allowing participants to track changes and quality of life impacts based on the symptoms most relevant to them- whether commonly associated with IgAN or not- alongside their individual treatment plan during an initial six-month observational period. By enabling participants to self-select and define what’s most relevant to them, rather than relying solely on pre-specified patient-reported outcomes (PROs), this approach provides a comprehensive and nuanced understanding of the lived experiences of IgAN.
This study is the first real-world data program designed to capture the at-home experiences of individuals and caregivers managing IgAN. Developed in collaboration with IgAN patients themselves, it directly measures patient-defined burden and evaluates the impact of various treatments on quality of life. As new therapies for IgAN become available, these insights will provide a timely and valuable understanding of real-world day-to-day experiences and treatment outcomes in this population.
Through the Folia platform, IgAN patients and caregivers can actively engage with their own study observations, gaining deeper insights into their symptom burden, treatment effects, and acute health events. The Folia app can generate tracking summary reports, allowing users to easily visualize their changes over time- such as symptom severity trends, frequency of flare-ups, and treatment responses. Folia can also overlay treatment usage with symptom severity and patients can export visual reports to share with their care teams.
This study is entirely remote, eliminating the need for clinic visits while still enabling participants to use their tracked data during medical appointments, ensuring that real-world insights can directly inform their care.
“The point of Folia is to provide a tool to help people with chronic conditions take more control over their care, and understand how their treatment plan is working for them. We're excited to bring these capabilities to kidney disease with this IgAN program, and look forward to the insights on treatment effectiveness and living with IgAN that our participants share with our research teams," said Nell Meosky Luo, the CEO & Founder of Folia Health.
“Advancing IgAN research requires more precise, real-world data captured directly from patients over time. This program enables the collection of granular, home-reported outcomes for the first time in this population, offering a richer, more accurate view of disease progression and treatment impact in everyday life,” said Briana Ndife, Director, HEOR, Nephrology at Novartis Pharmaceuticals.
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