A Mobile App-Based Observational Study to Track Symptoms, Treatment, and Quality of Life in Adults with C3 Glomerulopathy in the US

What this Trial Is About

Researchers are studying C3 glomerulopathy C3G, a rare kidney disease, to understand the range of symptoms, treatment use, and quality of life experienced by patients and their caregivers. This observational study aims to gather real-world data primarily through home-reported outcomes, supplemented by patient-reported outcome measures collected at the start and monthly during the study. The goal is to capture symptom variability and overall health impact, including information from patients taking the drug iptacopan. Participants will enroll using the Folia mobile app, where they will track their routine treatments, symptoms, treatment changes, and health-related quality of life over an initial six-month period. Monthly surveys will collect additional patient-reported data. The study may also link other data sources like electronic health records or wearable device information to enrich the dataset. Participants have the option to extend their involvement beyond six months by reconsenting. Throughout the study, participants will regularly report their symptoms, treatment patterns, and quality of life using the mobile app. Researchers will measure the frequency and severity of the top 10 symptoms, treatment use, reasons for missed treatments, and changes in quality of life over time. Data linkage and tokenization processes will help validate diagnoses and integrate additional health information. Total involvement starts at six months with potential extended participation.

Home Reported Outcomes in C3G Study