C3G, IC-MPGN Report A Disruptive Burden Regardless of Slowed Disease Progression

C3 glomerulopathy (C3G) and primary immune complex-mediated membranoproliferative glomerulonephritis (IC-MPGN) impose a significant, disruptive burden on patients and their caregivers, according to findings from a recent study.1

Although a majority of patients in this real-world cohort reported slow, stable, or improving disease progression, results still conveyed substantial and persistent clinical, economic, and quality-of-life impacts among patients with these glomerular diseases.¹

“This real-world study aimed to assess the clinical, economic, and humanistic burden of these conditions in Europe and the United States, addressing key evidence gaps,” wrote study investigator Carly Rich, PhD, the global director of the Swedish Orphan Biovitrum (SOBI), and colleagues.1

C3G and IC-MPGN are rare, serious chronic kidney diseases that can have a considerable individual impact. Common clinical manifestations include proteinuria, fatigue, low energy levels, edema, and hypertension, with diagnoses often occurring incidentally because of nonspecific symptoms.2,3

The lifelong persistence of symptoms can negatively affect daily functioning, psychological health, and overall well-being. In addition, frequent healthcare visits, hospitalizations, and the need for dialysis in a subset of patients contribute to substantial economic strain on patients, families, and caregivers. Yet, the real-world impact on patients and families affected by these glomerular diseases has not been assessed.2,3

In a multinational, cross-sectional survey, Rich and colleagues collected routine clinical data from treating healthcare professionals and patients during standard medical care. Patients and clinicians completed surveys reflecting their experiences with C3G or IC-MPGN. Fatigue was measured using the self-reported FACIT-Fatigue scale of 0–52, where increased scores indicated less fatigue and better quality of life. Investigators assessed proteinuria through 24-hour urine protein levels (g/24h).1

In the C3G cohort, 93 clinicians returned data for 289 patients, and 52 patients completed self-reported surveys. In the IC-MPGN cohort, 61 clinicians returned data for 215 patients, and 54 patients completed surveys.1

Investigators reported similar baseline clinical characteristics and comorbidity rates for both groups. Of note to Rich and colleagues, a majority of both patient groups, 81% in C3G and 89% in IC-MPGN, had stable or improving disease. Overall, average 24-hour proteinuria levels were 2.3 g/24 hours for C3G and 1.6 g/24 hours for IC-MPGN.1

Rich and colleagues observed differences in reported symptoms from the clinician and patient perspectives. The most commonly reported symptom by physicians was proteinuria in both C3G (69%) and IC-MPGN (56%). Whereas, most patients reported fatigue or lower energy (50% and 53%), emphasizing their perceived quality of life impacts.1

Patient-reported mean FACIT-Fatigue scores were 34.7 for C3G and 34.9 for IC-MPGN. Annually, patients averaged 12.3 physician visits for C3G and 10.7 for IC-MPGN, underscoring the ongoing healthcare burden observed by investigators. Full-time employment was reported by 58% of patients with C3G and 69% of those with IC-MPGN.¹

Caregiver support was reported for 15% of patients with C3G and 25% of those with IC-MPGN, further emphasizing the broader family and interpersonal burden investigators have associated with these diseases.¹

“Despite slowly progressing disease in the current cohort, C3G and primary IC-MPGN create a significant clinical, economic, and healthcare burden among affected patients and their families,” the investigators concluded.1

References

1. Caravaca-Fontan F, Norouzi S, Huang M, et al. Real-World Patient Characteristics, Burden, and Quality of Life in C3 Glomerulopathy and Primary Immune Complex Membranoproliferative Glomerulonephritis. Kidney360. Published online December 8, 2025. doi:10.34067/KID.0000001059

2. C3 Glomerulonephritis & IC-MPGN: The European Rare Kidney Disease Reference Network for Patients. Erknet.org. Published 2015. Accessed December 19, 2025. https://www.erknet.org/patients/your-kidney-disease/c3g-ic-mpgn/disease-information

3. Fontan FC, Aris ÁM, Moreno M, Jorge MV, Nafissi J, Terente MP. #3469 Socioeconomic and psycho-emotional impact of C3 glomerulopathy and immune complex membranoproliferative glomerulonephritis in adult patients in Spain. Nephrology Dialysis Transplantation. Accessed December 15, 2025. doi:https://doi.org/10.1093/ndt/gfaf116.0328

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