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

Status: Recruiting
Location: See location...
Intervention Type: Other
Study Type: Observational
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
Participation Requirements
Sex: All
Maximum Age: 75
Healthy Volunteers: f
View:

• 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

Locations
Other Locations
Austria
Division of Pediatric Nephrology and Gastroenterology, Department of Pediatrics and Adolescent Medicine, Comprehensive Center for Pediatrics, Medical University of Vienna, 1090 Vienna, Austria.
RECRUITING
Vienna
Contact Information
Primary
Christoph Aufricht, Prof. MD
christoph.aufricht@meduniwien.ac.at
+4314040021115
Backup
Lisa Daniel-Fischer, MD
lisa.daniel-fischer@meduniwien.ac.at
+4314040021115
Time Frame
Start Date: 2023-01-01
Estimated Completion Date: 2033-12-31
Participants
Target number of participants: 100
Treatments
ARREST NEPHROSIS Participants
Sponsors
Leads: Christoph Aufricht

This content was sourced from clinicaltrials.gov