Registry and biobank for resistant nephrotic syndrome treatment responses

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

The ARREST-NEPHROSIS initiative aims to gather real-world data on treatment patterns and outcomes for patients with resistant nephrotic syndrome, particularly those with focal segmental glomerulosclerosis. This observational registry will facilitate networking among patients, families, and clinicians while establishing a biobank for future research into biomarkers and therapies. By creating a comprehensive patient database, the project seeks to enhance recruitment for clinical trials of new treatments. The study addresses the urgent need for effective therapies in a population that is often overlooked due to the rarity of the condition.

Why it matters

Who can join: the full rules

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)

Where it's running

• Division of Pediatric Nephrology and Gastroenterology, Department of Pediatrics and Adolescent Medicine, Comprehensive Center for Pediatrics, Medical University of Vienna, 1090 Vienna, Austria.
  Vienna, Austria Recruiting

Study contacts

• Study coordinator: Christoph Aufricht, Prof. MD
• Email: christoph.aufricht@meduniwien.ac.at
• Phone: +4314040021115

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How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.