At a glance
ClinicalIndex Comparison Record- ✓Resistant to standard immunosuppressive agents (if clinically indicated for primary/non-genetic forms)
- ✓Persistent urinary protein-to-creatinine ratio >1.0 g/g
- ✓eGFR greater than 30 ml/min per 1.73 m2
- ✓Biopsy or disease-causing genetic mutation associated with nephrotic syndrome
- ✕Inability or unwillingness to comply with repeated assessments
- ✕Objections against participation at discretion of investigator
- ✕Secondary FSGS
- ✕Steroid-dependence or frequently relapsing disease without complete remission
Standardized by ClinicalIndex from the ClinicalTrials.gov record · verify against the source.
ARREST-NEPHROSIS - Austrian Resistant Nephrotic Syndrome Treatment Response Registry and Biobank
In Brief
An observational study evaluating Registry for Focal Segmental Glomerulosclerosis and 3 related conditions. Currently recruiting, targeting 100 participants across 1 site.
Detailed Summary
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
Study Details
Timeline
Interventions
Registry Participation, providing data and clinical specimen