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

Launched by CHRISTOPH AUFRICHT · Nov 30, 2023

Keywords

ClinConnect Summary

The ARREST-NEPHROSIS study is focused on understanding and improving treatment for a kidney condition called nephrotic syndrome, particularly in patients who do not respond well to standard treatments. This condition leads to high levels of protein in the urine, swelling, and impaired kidney function. The trial aims to collect real-world information about treatment practices and outcomes, connect patients and families with healthcare providers, and create a resource for future research, including a biobank to study potential new treatments and disease markers.

To be eligible for this study, participants should have nephrotic syndrome that hasn’t improved with standard immunosuppressive treatments, show persistent protein loss in their urine, and have a certain level of kidney function. Patients who are willing to undergo regular assessments can join the study, which is currently recruiting individuals of all ages and genders. Participants will help contribute to important research that could lead to better treatment options for themselves and others facing similar health challenges.

Gender

ALL

Eligibility criteria

• Inclusion Criteria:
• • Resistant to standard Immunosuppressive agents (if clinically indicated, e.g. primary/non-genetic forms)
• • Persistent urinary protein-to-creatinine (UP/C) ratio \>1.0 g/g
• • eGFR \> 30 ml/min per 1.73 m2
• • biopsy or a disease-causing genetic mutation associated with nephrotic syndrome
• Exclusion Criteria:
• • Inability or unwillingness to comply with repeated assessments
• • Objections against participation at discretion of the investigator
• • Secondary
• • Patients with steroid-dependence/frequently relapsing disease (but achievement of complete remission)