A National Prospective Cohort of Patients With Idiopathic Nephrotic Syndrome Beginning in Childhood.
Led by University Hospital, Limoges · Updated on 2026-03-13
1180
Participants Needed
48
Research Sites
939 weeks
Total Duration
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What this Trial Is About
Researchers are conducting a prospective, multicenter cohort study to follow children with idiopathic nephrotic syndrome (INS), a rare kidney disease. The study aims to collect data on pediatric patients treated by pediatric nephrologists in France and its overseas territories to better understand the disease's characteristics and support future clinical trials.
The study involves regularly recording medical, biological, psychological, and social data through routine clinical follow-ups, hospitalizations, and consultations. Additionally, annual telephone interviews will be conducted for patients in remission. Quality of life, treatment adherence, and treatment impact questionnaires will also be collected. A biobank is established to collect blood, urine, hair, and nail samples at the disease onset before immunosuppressive treatment begins.
Participants will be followed from disease onset until age 18 or transfer to adult nephrology care. Data is collected via a secure website, medically validated and entered by clinical research staff. The main outcome is the number of cases included and their characteristics over two years. Participation involves routine care visits, interviews, and questionnaires, with continued monitoring planned through the study period ending in 2048.
CONDITIONS
Brief Title
A National Prospective Cohort of Patients With Idiopathic Nephrotic Syndrome Beginning in Childhood.
Who Can Participate
Age: 0 - 18Years
All Genders
Eligibility Criteria
You may qualify if you...
Patient under 18 years of age
Diagnosed with idiopathic nephrotic syndrome after January 1, 2018
Seen at least once by a pediatrician who is a member of the Society of Pediatric Nephrology
Residing in France or its overseas territories
Consent signed by parents and patient's agreement to participate (if of age)
Affiliated to a social security system
You will not qualify if you...
Refusal of the patient or legal representatives to participate in the cohort
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Your Study Journey
Screening
Duration - 2 to 4 weeks
Participants are screened for eligibility to participate in the trial.
1 visit (in-person)
Surveillance
Duration - Up to 18 years or until transfer to adult nephrology care
Participants with idiopathic nephrotic syndrome are regularly observed through medical record data collected during routine clinical follow-up, telephone interviews for annual follow-ups, and completion of quality of life, treatment compliance, and aesthetic impact questionnaires.
Regular routine clinical visits and annual telephone interviews
A "Trial within a Cohort" platform for pediatric clinical trials on idiopathic nephrotic syndrome: scope, objectives, and design of the retrospective-prospective cohort PIN'SNP.