ARREST-NEPHROSIS - Austrian Resistant Nephrotic Syndrome Treatment Response Registry and Biobank
Christoph Aufricht
100 participants
Jan 1, 2023
OBSERVATIONAL
Conditions
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
Eligibility
Inclusion Criteria4
- 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 Criteria4
- 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)
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Interventions
Registry Participation, providing data and clinical specimen
Locations(1)
View Full Details on ClinicalTrials.gov
For the most up-to-date information, visit the official listing.
NCT06162546