National cohort of children with idiopathic nephrotic syndrome

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

This study aims to create a prospective cohort of pediatric patients diagnosed with idiopathic nephrotic syndrome (INS) to collect and analyze their epidemiological characteristics. The cohort will include patients treated at centers affiliated with the Société de Néphrologie Pédiatrique in France, with data collected through medical records, telephone interviews, and quality of life questionnaires. The goal is to establish a structured follow-up system that will facilitate future cohort-nested trials and improve understanding of this rare disease.

Why it matters

Who can join: the full rules

Inclusion Criteria:

* Patient under 18 years of age
* With idiopathic nephrotic syndrome (according to SPN criteria) beginning after January 1, 2018
* Child seen at least once in consultation or hospitalization by a pediatrician member of the Society of Pediatric Nephrology
* Residing in France
* Consent signed by parents and patient's agreement to participate (if of age)
* Affiliated to a social security system.

Exclusion Criteria:

* Refusal of the patient or legal representatives to participate in the cohort

Where it's running

• CH d'Agen
  Agen, France Recruiting
• CHU d'Amiens
  Amiens, France Recruiting
• CHU d'Auxerre
  Auxerre, France Recruiting
• CH de la côte basque
  Bayonne, France Recruiting
• CHU de Besançon
  Besançon, France Recruiting
• CHU de Boredeaux
  Bordeaux, France Recruiting

Study contacts

• Principal investigator: Vincent Guigonis, MD — University Hospital, Limoges
• Study coordinator: Vincent Guigonis, MD
• Email: vincent.guigonis@unilim.fr
• Phone: +33 5 55 0563 58

Similar studies

Other studies for the same condition or treatment. Recruiting studies are listed first.

• Registry for patients with Focal Segmental Glomerulosclerosis and Minimal Change Disease

  This study is setting up a registry to collect health information and samples from kids and adults with certain kidney diseases to help researchers learn more about them and improve treatments.

  Recruiting at 10 sites University of Cologne · Cologne, North Rhine-Westphalia and 11 other locations · NCT03949972

• Autoimmune podocytopathy and anti-nephrin antibodies

  This study tests whether children and adults with nephrotic syndrome have anti-nephrin autoantibodies and whether those antibodies relate to relapses and treatment response.

  Recruiting Meyer Children's Hospital IRCCS · Rochester, Minnesota and 13 other locations · NCT07516964

• Treatment with AP1189 for patients with severe proteinuria due to idiopathic membranous nephropathy

  This study is testing if a new drug called AP1189 can help people with severe proteinuria caused by idiopathic membranous nephropathy feel better when added to their current treatment.

  Recruiting Phase 2 SynAct Pharma Aps · Aarhus · NCT04456816

• Non-invasive diagnosis for idiopathic nephrotic syndrome using blood antibodies and a routine-data score

  This project will test whether blood antibody tests together with a routine-data score (SNIT) can diagnose idiopathic nephrotic syndrome without a kidney biopsy in adults with a first episode who are anti-PLA2R negative.

  Recruiting Assistance Publique - Hôpitaux de Paris · Paris, France · NCT06820866

• Smartphone app to help follow the 2024 KDIGO chronic kidney disease guidelines

  This project will test whether a smartphone app helps young adults (ages 16–29) with chronic kidney disease follow the 2024 KDIGO guideline recommendations.

  Recruiting at 2 sites St. James's Hospital, Ireland · Dublin and 1 other locations · NCT07561957

• SGLT2 inhibitors added to standard care in adult primary nephrotic syndrome

  This trial tests whether adding dapagliflozin or empagliflozin to standard treatment helps reduce protein in urine for adults with primary nephrotic syndrome.

  Recruiting Phase 2/3 Mansoura University · Al Mansurah, Dakahlia Governorate · NCT07214818

How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.