ARREST-NEPHROSIS Registry and Biobank for Resistant Nephrotic Syndrome and Focal Segmental Glomerulosclerosis Long-term Study Collecting Patient Data and Samples to Improve Treatment and Research

What this Trial Is About

Nephrotic syndrome includes a group of kidney diseases causing protein loss in urine, blood protein abnormalities, fluid buildup, and kidney function problems. This research focuses on patients with resistant nephrotic syndrome, especially those with a condition called focal segmental glomerulosclerosis FSGS, which can lead to kidney failure. The study aims to collect real-world data, connect patients and clinicians, recruit participants for future research, and build a biobank for studying biomarkers and disease progression. Participants who meet certain criteria, such as resistance to standard immunosuppressive treatments, specific protein levels in urine, and sufficient kidney function, will be invited to join the ARREST-NEPHROSIS registry. They will provide clinical information and samples to support research on resistant nephrotic syndrome. The registry supports long-term data collection to better understand treatment responses and disease outcomes. During the study, participants will undergo regular clinical assessments and contribute data about their health, treatments, and kidney function. Researchers will monitor proteinuria levels and kidney performance over time, including patient-reported outcomes. The study will last up to 20 years, allowing for continuous observation and networking among patients, families, and healthcare providers to improve future care and research opportunities.

ARREST-NEPHROSIS - Austrian Resistant Nephrotic Syndrome Treatment Response Registry and Biobank