Nephrotic syndrome is the clinical phenotype of a heterogeneous group of glomerular diseases that may present with varying degrees of urinary protein loss (proteinuria), dysproteinemia in the blood, fluid retention and impaired renal function.
The AustRian RESistanT NEPHROtic Syndrome Treatment Response RegIStry and Biobank (ARREST-NEPHROSIS) sets out to achieve the following goals, as typical categories of rare disease registries
1. Obtaining real world data on practice patterns and outcomes 2. Networking between affected patients, families, and clinicians. 3. Establish a patient base for facilitated recruitment in studies of drugs, medical devices, and products 4. Development of a Biobank to enable research of potential biomarkers and therapy or disease courses
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
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)
Christoph Aufricht
Lead sponsor
Medical University of Vienna
Sponsor institution