Actively Recruiting

Age: 0 - 18Years
All Genders
ID04207580

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

On this page

AI-Summary

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

Eligible

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
Not Eligible

You will not qualify if you...

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

AI-Screening

AI-Powered Screening

Complete this quick 3-step screening to check your eligibility

1
2
3
+1

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

Trial Site Locations

Total: 48 locations

1

CH d'Agen

Agen, France, 47000

Actively Recruiting

2

CHU d'Amiens

Amiens, France, 80000

Actively Recruiting

3

CHU d'Auxerre

Auxerre, France, 89000

Actively Recruiting

4

CH de la côte basque

Bayonne, France, 64100

Actively Recruiting

5

CHU de Besançon

Besançon, France, 25000

Actively Recruiting

6

CHU de Boredeaux

Bordeaux, France, 33000

Actively Recruiting

7

CHU de Brest

Brest, France, 29609

Actively Recruiting

8

HCL Lyon

Bron, France, 69500

Actively Recruiting

9

CH de Chambéry

Chambéry, France, 73011

Actively Recruiting

10

CHU de Clermont Ferrand

Clermont-Ferrand, France, 63000

Actively Recruiting

11

CHU de Dijon

Dijon, France, 21079

Actively Recruiting

12

CH du Val d'Ariège

Foix, France, 09000

Actively Recruiting

13

CH de la Rochelle

La Rochelle, France, 17019

Actively Recruiting

14

CHU de Grenoble

La Tronche, France, 38700

Actively Recruiting

15

CH de Versaille

Le Chesnay, France, 78150

Actively Recruiting

16

CHU de Lille - Hôpital Jeanne de Flandre

Lille, France, 59037

Actively Recruiting

17

Limoges Hospital

Limoges, France, 87 042

Actively Recruiting

18

CHU de Marseille - Timone enfants

Marseille, France, 13385

Actively Recruiting

19

CH de Macon

Mâcon, France, 71018

Actively Recruiting

20

CHU de Montpellier - Hôpital Arnaud de Villeneuve

Montpellier, France, 34090

Actively Recruiting

21

CHU de Nancy

Nancy, France, 54500

Actively Recruiting

22

CHU de Nantes

Nantes, France, 44093

Actively Recruiting

23

CHU de Nice - Hopital Larchet

Nice, France, 06200

Actively Recruiting

24

CHU de Nimes

Nîmes, France, 30900

Actively Recruiting

25

AP-HP Trousseau

Paris, France, 75012

Actively Recruiting

26

AP-HP Robert Debré

Paris, France, 75019

Actively Recruiting

27

AP-HP Necker

Paris, France, 75743

Actively Recruiting

28

CH de Pau

Pau, France, 64000

Actively Recruiting

29

CH de Perpignan

Perpignan, France, 66000

Actively Recruiting

30

CH de Périgueux

Périgueux, France, 24000

Actively Recruiting

31

CHU de Poitiers

Poitiers, France, 86000

Actively Recruiting

32

CH d'Annecy

Pringy, France, 74374

Actively Recruiting

33

CHU de Reims

Reims, France, 57092

Actively Recruiting

34

CHU de Rennes

Rennes, France, 35203

Actively Recruiting

35

CH de Roanne

Roanne, France, 42300

Not Yet Recruiting

36

CH de Roubaix

Roubaix, France, 59100

Actively Recruiting

37

CHU de Rouen

Rouen, France, 76031

Actively Recruiting

38

CHU de Saint-Etienne

Saint-Priest-en-Jarez, France, 42270

Actively Recruiting

39

CH de Sallanches

Sallanches, France, 74700

Terminated

40

CHRU de Strasbourg

Strasbourg, France, 67200

Actively Recruiting

41

CH de Toulon

Toulon, France, 83056

Actively Recruiting

42

CHU de Toulouse

Toulouse, France, 31300

Actively Recruiting

43

CHU de Tours

Tours, France, 37000

Actively Recruiting

44

CH de Vannes

Vannes, France, 56000

Not Yet Recruiting

45

CH de Villefranche

Villefranche-sur-Saône, France, 69655

Actively Recruiting

46

CH de Voiron

Voiron, France, 38500

Actively Recruiting

47

CHU de La Réunion - Félix Guyon

Saint-Denis, Reunion, 97400

Actively Recruiting

48

CHU de la Réunion

Saint-Pierre, Reunion, 97448

Actively Recruiting

Loading map...

Research Team

V

Vincent Guigonis, MD

C

Claire Bahans, PhD

How is the study designed?

Study Type

OBSERVATIONAL

Masking

N/A

Allocation

N/A

Model

N/A

Primary Purpose

N/A

Number of Arms

1

Similar Trials

The FOrMe Registry: German Registry for Focal Segmental Glom...

Glomerulosclerosis, Focal Segmental

Actively Recruiting

12 locations

Frequently Asked Questions

Have more questions? Get in touch with our team for quick support

Not the Right Trial for You?

Explore thousands of other clinical trials that might be a better match.
Sign up to get personalized trial recommendations delivered to your inbox.

Already have an account? Log in here

Published Research Related To This Trial

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.

Claire Bahans, Olivia Boyer, Olivier Dunand...

https://pubmed.ncbi.nlm.nih.gov/40032676