Novartis and Folia Health launch first app-based real-world study to capture at-home experience of IgA nephropathy patients

Novartis Pharmaceuticals and Folia Health are partnering on a remote study to assess the daily impact of IgA nephropathy (IgAN). Using Folia Health’s platform, the study will collect home-reported outcomes (HROs) on symptoms, treatment effects, and quality of life, providing insights to support research and personalized care.

Novartis Pharmaceuticals, whose treatments reach over 250 million people worldwide, has announced a collaboration with Folia Health to gather real-world insights into IgAN. Unlike traditional studies that focus on predefined patient-reported outcomes (PROs), this at-home observational study enables participants to identify and monitor the symptoms and quality-of-life factors most relevant to them. By combining personalized tracking with real-world data (RWD) collection, the study aims to provide a broader perspective on how IgAN affects daily life.

“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.

Developed with input from individuals living with IgAN, this study is the first RWD program designed to document at-home experiences. Over a 6-month observational period, participants will use the Folia app to track symptoms, treatment effects, and health events, providing insights into their condition.

Folia Health specializes in the collection of home-reported outcomes (HROs) to generate real-world insights that support research and therapy development for chronic conditions. Through its platform, patients and caregivers can create summary reports visualizing symptom patterns, changes in severity, and treatment responses. The platform also overlays treatment use with symptom trends, allowing participants to share reports with their healthcare providers.

“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,” said Nell Meosky Luo, CEO and Founder of Folia Health. “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.”

As a fully remote study, the initiative eliminates the need for clinic visits while enabling participants to use their tracked data during medical appointments. The collection of HROs ensures that patient experiences outside clinical settings are incorporated into research and care strategies.