RecruitingNot Applicable

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

Austria100 participantsStarted 2023-01-01

Plain-language 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

Who can participate

Age range

75 Years

Sex

ALL

See this in plain English?

AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.

Inclusion Criteria: * 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 Criteria: * 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)

Questions worth asking your doctor

Bring these to your next appointment. They're a starting point for a shared conversation — not a sign you qualify or a recommendation to enrol.

1Based on my diagnosis and history, is this trial worth exploring for me — or is there a standard treatment we should try first?
2What does this trial's phase tell us about how much is already known about its safety and benefit?
3What would taking part actually involve for me — visits, tests, time, and travel?
4What are the known and possible risks or side effects I should weigh, and how would they be monitored?
5If this trial isn't the right fit, what other options or trials would you suggest I look into?

Generated to help you prepare — always confirm anything about your own eligibility and care with the study team and your doctor.

Questions for the trial coordinator

The trial coordinator is the person who runs the study day to day. These cover the practical side — logistics, costs, and what taking part would actually mean for your life. The study team confirms whether you meet the criteria; these are questions to ask, not a sign you qualify.

1What does taking part actually involve week to week — how many visits, where, and how long does each one take?
2What costs are covered by the study, and what might I have to pay for myself, including travel, parking, or time off work?
3What happens during screening, and what happens if the study team confirms I don't meet the criteria after those tests?
4Who pays for the scans, blood work, and other tests the trial requires — the study, my insurance, or me?
5How will being in the trial affect my regular care, and will my own doctor stay informed and involved?
6Can I leave the trial at any point if I change my mind, and what would happen to my care if I do?

A starting point for the conversation — always confirm anything about your own eligibility, costs, and care with the study team and your doctor.

What they're measuring

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

Trial details

NCT IDNCT06162546

SponsorChristoph Aufricht

Sponsor typeOTHER

Study typeOBSERVATIONAL

Primary completion2033-12-31

Contact for this trial

Christoph Aufricht, Prof. MD

+4314040021115 christoph.aufricht@meduniwien.ac.at

View on ClinicalTrials.gov More Focal Segmental Glomerulosclerosis trials

Plain-language summary

Who can participate

Age range

75 Years

Sex

ALL

See this in plain English?

AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.

What they're measuring

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