ARREST-NEPHROSIS - Austrian Resistant Nephrotic Syndrome Treatment Response Registry and Biobank

Condition(s) studied

Investigational drug(s) / intervention(s)

Registry: Registry Participation, providing data and clinical specimen

Study 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

Primary outcome measure(s)

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

Trial sites (1)

Other trials for the same condition