Folia Health has launched an at-home study for individuals with C3 glomerulopathy (C3G) in partnership with Novartis. The study will use Folia’s app to track patient-reported outcomes, including symptoms, treatments, and their impact on quality of life over a six-month period. This collaboration aims to understand real-world experiences and treatment outcomes as new C3G therapies emerge.
This research is crucial for C3G patients because it empowers them to actively participate in data collection relevant to their lived experiences, potentially leading to more patient-centric treatments and improved standards of care. The study design, focusing on home-reported data, removes the burden of clinic visits, making participation more accessible and increasing the potential for diverse data collection. This approach may yield a more comprehensive understanding of C3G’s impact on daily life than traditional clinical trials.
The study uses Folia’s app to gather personalized treatment plans, monthly patient-reported outcomes, and track symptoms, even those not typically associated with C3G. The collected data will be anonymized and added to Novartis’ real-world evidence database, APPRISE. Patients will be able to visualize their health trends and share reports with their healthcare providers.
This initiative represents a significant step towards incorporating real-world data into rare disease research. The insights gained could influence the development of new C3G therapies and inform treatment strategies, ultimately improving the lives of individuals living with this rare renal disease. Furthermore, it establishes a model for patient-centric research in other rare diseases, potentially accelerating progress across multiple therapeutic areas.
Jon Napitupulu is Director of Media Relations at The Clinical Trial Vanguard. Jon, a computer data scientist, focuses on the latest clinical trial industry news and trends.
