Folia Health Expands Its Rare Renal Disease Research with a New C3G Study to Assess Real-World Disease Impact

BOSTON, April 10, 2025 (GLOBE NEWSWIRE) -- Folia Health launches enrollment for an innovative, at-home real-world evidence initiative for individuals with C3 glomerulopathy (C3G). Designed in partnership with C3G clinicians and patients, this study uses Folia’s app-based platform to track home-reported outcomes (HROs) based on symptoms most relevant to participants—whether common to C3G or not, alongside their personalized treatment plan and monthly patient-reported outcomes (PROs) over an initial six-month observational period. This initiative, conducted in collaboration with Novartis Pharmaceuticals Corporation, aims to directly measure patient-defined burden and evaluate the impact of various treatments on quality of life.

As new therapies for C3G emerge, these insights will provide a timely and valuable understanding of real-world experiences and treatment outcomes. This nuanced approach offers a comprehensive and nuanced view of life with C3G and demonstrates both organizations’ commitment to advancing research in rare renal diseases. Data collected in this study will be tokenized and integrated into Novartis’ real-world evidence database, APPRISE.

Using the Folia platform, C3G 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 generates tracking summary reports, helping users visualize trends over time, such as symptom severity, flare-up frequency, and treatment responses. Folia can also overlay treatment usage with symptom severity changes, enabling patients to export visual reports to share with their care teams.

This fully remote study eliminates clinic visits while ensuring that real-world data directly informs both research and patient care. Enrollment is now open.

“Our team at Folia is energized when given the opportunity to work deeply in a condition area with patients and family members who are looking for tools to be able to get their arms around a stressful and complex healthcare experience. We are looking forward to extending our partnership with the rare kidney disease community with this second program in a rare kidney condition.” said Nell Meosky Luo, the CEO & Founder of Folia Health.

About Folia Health:

Folia Health is the home-reported outcomes (HROs) platform on a mission to help patients better understand their health and advocate for more precise care. Built on the belief that what matters to patients matters to research, our innovative health tracking platform is a comprehensive, yet simple solution for patients to capture the symptoms, treatments, flare events, and additional life context most important to them. Patients can access insights, correlations, and choose to share their anonymous data for research to help develop more effective therapies and better standards of care. To learn more about how Folia bridges the gap between patients, clinicians, and researchers, visit www.foliahealth.com.

Folia Health Contact:
Connie Zhang
+1 617-903-8271
connie@foliahealth.com