Abstract: SA-PO0775
Baseline Characteristics and Treatment Satisfaction of Patients (Pts) Enrolled in C3 Glomerulopathy (C3G) Connect: Interim Results from a Home-Reported Outcomes (HROs) Study
Session Information
- Glomerular Research: Design, Registries, Surveys, and Epidemiology
November 08, 2025 | Location: Exhibit Hall, Convention Center
Abstract Time: 10:00 AM - 12:00 PM
Category: Glomerular Diseases
- 1402 Glomerular Diseases: Clinical, Outcomes, and Therapeutics
Authors
- Khairnar, Rahul, Novartis Pharmaceuticals Corporation, East Hanover, New Jersey, United States
- Narayanan, Mohanram, Baylor Scott & White Health, Dallas, Texas, United States
- Anwar, Hiba, Folia Health, Boston, Massachusetts, United States
- Stephens, Luke, Folia Health, Boston, Massachusetts, United States
- Zhang, Connie, Folia Health, Boston, Massachusetts, United States
- McStocker, Samantha, Folia Health, Boston, Massachusetts, United States
- Healey, Amanda, Folia Health, Boston, Massachusetts, United States
- Owashi, Jordan, Folia Health, Boston, Massachusetts, United States
- Villard, Sarah, Folia Health, Boston, Massachusetts, United States
- Trenz, Helen, Novartis Pharmaceuticals Corporation, East Hanover, New Jersey, United States
- Alfano, Anne Marie, Bondville, Bondville, Vermont, United States
- Rice, Aran John, Boulder, Boulder, Colorado, United States
- Ndife, Briana C., Novartis Pharmaceuticals Corporation, East Hanover, New Jersey, United States
- Norouzi, Sayna, Loma Linda University, Loma Linda, California, United States
- Canetta, Pietro A., Columbia University, New York, New York, United States
Background
C3G is a chronic, rare kidney disease that has a significant burden on pts. Real-world insights from pts regarding symptoms, disease burden, and treatment effects can be captured by HROs, which is particularly important as new therapies emerge. This abstract presents a preliminary analysis of baseline characteristics, disease burden, and treatment patterns of pts with C3G enrolled in the ongoing C3G Connect Study.
Methods
This study is a remote, prospective, 6-month observational study using a mobile app to collect HROs of pts with C3G in the US. Enrollment began in April 2025; a wide-net enrollment and eligibility approach is used to recruit pts. Pts initially report their baseline health status, including treatment satisfaction, and then select symptoms and treatments to track during the study period. Monthly surveys assess health-related quality of life using Functional Assessment of Chronic Illness Therapy – Fatigue Scale (FACIT-Fatigue) and EQ-5D-5L scores.
Results
This preliminary analysis included 12 pts who selected 39 symptoms/observations and 44 treatments to track during the study. At baseline, the most commonly tracked symptoms/observations included fatigue (92%), foamy/bubbly urine (50%), and bowel movement (42%); additionally, 92% selected to track blood pressure. The most common treatments included mycophenolate (25%), iptacopan (17%), and furosemide (17%). Among pts who completed baseline HROs (n=10), mean ± SD baseline FACIT-Fatigue score was 28.3 ± 12.0 and EQ-5D-5L score was 0.8 ± 0.2. Treatment satisfaction varied among the 9 pts who provided a response: 1 reported being “very satisfied,” 5 were “somewhat satisfied,” 2 were “not satisfied,” and 1 was not currently taking medication.
Conclusion
In this small initial sample of pts with C3G, tracked symptoms and treatment satisfaction varied, and fatigue was the most frequently tracked symptom at baseline. This heterogeneity highlights a need to understand the diverse perspectives and symptom burden of pts with C3G, and how app-based tracking of HROs can capture these individualized experiences and supplement pt-reported outcomes.
Funding
- Commercial Support – Novartis Pharmaceutical Corporation