A National Prospective Cohort of Patients With Idiopathic Nephrotic Syndrome Beginning in Childhood.

Condition(s) studied

Investigational drug(s) / intervention(s)

Inclusion and follow up of pediatric patients with an idiopathic nephrotic syndrome,: The study consists in collecting clinical, biological, psychological and social data of INS pediatric patients. A bio collection is also created: blood, urine, hair and nails will be collected at the beginning of the INS (before starting immunosuppressive treatment).

Study summary

Pediatric idiopathic nephrotic syndrome (INS) is a rare disease for which the optimal therapeutic strategy has not yet been defined. A network of clinicians treating complicated forms of this disease (grouped within the Société de Néphrologie Pédiatrique, SNP) exists, but to date there is no prospective cohort following up these patients that would facilitate the development of cohort-nested trials. This absence of structured follow up makes it difficult to set up prospective studies.

The main objective is to create a prospective cohort of pediatric INS patients to collect cases treated in SNP centers, to study their epidemiological characteristics, and to provide a basis for comparison for future cohort-nested trials.

Eligibility

Primary outcome measure(s)

• Number of cases included in the cohort and description of their characteristics — 2 years
  * Number of followed cases, gender, and age * Geographical localization of followed cases * Progressive disease pattern (relapses, corticosteroid dependence, other treatments used) * Serious side effects related to treatment

Trial sites (48)

+ 8 more sites — see the full list on the official registry below.

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