Long-Term Outcomes in Nephrotic Syndrome by Kidney Biopsy Diagnosis and Proteinuria
Journal of the American Society of Nephrology – 2025
Focal segmental glomerulosclerosis (FSGS) can be caused by a variety of factors such as genetics, drugs, or infections.1-3 FSGS accounts for approximately 35% of all nephrotic syndrome cases.1-3 The incidence of FSGS in the US from 2004 to 2013 was 3.2 per 100,000 person-years, a 41% increase over the previous decade.1,4 The goal of therapy is reduction or remission of proteinuria, as there is no cure.1,5 Up to half of patients progress to kidney failure within 5 to 10 years, resulting in a need for dialysis or transplantation that places a substantial burden on the healthcare system.1,6,7 Despite this high burden, there is limited real-world data about FSGS in the US.1
This study used data from the US Renal Data System (USRDS) to assess the epidemiology, characteristics, treatment patterns, and outcomes of patients with FSGS kidney failure.1
A retrospective cohort analysis identified all patients with kidney failure due to FSGS in the USRDS, a national database covering all patients with kidney failure, from 2008 to 2018.1 Data on patient demographics, treatment patterns, and clinical outcomes were summarized.1 Index date was the first registration of data, and patients were followed until death, loss to follow-up, or data end.1
Data on healthcare resource usage and costs were assessed in a subgroup of patients with ≥1 year of continuous Medicare coverage.1
Prevalence and incidence
From 2008 to 2018, the mean annual period prevalence and incidence of kidney failure due to FSGS in the US were 87.6 and 7.5 per million, respectively.1 Prevalence per million increased from 76.5 in 2008 to 96.0 in 2018.1
Baseline demographics
Treatment and clinical outcomes
In the overall cohort:
One-third of patients received a kidney transplant during the study period1
In total, 7.3% of patients received a kidney transplant as their initial treatment.1 This increased to 14.7% by one year after index date and 33.0% over the entire study period.1 Median time to transplant was 7.2 years.1
Healthcare resource utilization and economic burden was high1
In the Medicare subgroup, 76.6% had an inpatient admission, and among hospitalized patients, the average stay was 3.8 days per patient per month.1 In this subgroup, the mean annual total healthcare costs were $68,384.1
Kidney failure due to FSGS imposes a high clinical and economic burden on both patients and healthcare systems.1 Therapies for kidney failure, like dialysis and transplant, contribute to a high economic burden for patients.1 These data suggest that novel treatments that slow progression to kidney failure are needed to reduce this burden.1
This work was supported by Travere Therapeutics, Inc. Please see the publication for the full list of disclosures.
FSGS, focal segmental glomerulosclerosis; SD, standard deviation; US, United States; USRDS, US Renal Data System.
MA-DS-24-0034 | February 2026