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
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Obtaining real world data on practice patterns and outcomes in resistant nephrotic syndrome
Timeframe: up to 20 years
Enable networking between patients, families, and clinicians affected by resistant nephrotic syndrome
Timeframe: up to 20 years
Establish a patient base for facilitated recruitment in studies of drugs, medical devices, and products on resistant nephrotic syndrome
Timeframe: up to 20 years
Development of a Biobank to enable research of potential biomarkers and therapy or disease courses
Timeframe: up to 20 years
Christoph Aufricht, Prof. MD