A National Prospective Cohort of Patients With Idiopathic Nephrotic Syndrome Beginning in Childhood. (PIN'SNP)

March 11, 2026 updated by: University Hospital, Limoges

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.

Study Overview

Status

Recruiting

Conditions

Idiopathic Nephrotic Syndrome

Intervention / Treatment

Other: Inclusion and follow up of pediatric patients with an idiopathic nephrotic syndrome,

Detailed Description

In this study, data from patients with INS will be recorded prospectively, regularly and systematically. The cohort will be composed of patients followed by pediatric nephrologists affiliated with the SNP. Metropolitan France, Reunion Island and Mayotte are the geographical areas concerned. It is planned to integrate other French overseas departments and territories, in particular the West Indies.

This is therefore a prospective, multicenter, cohort follow-up study. The data will be centralized via a secure website dedicated to the study.

Data will be obtained from:

Medical record data (hospitalization/consultations) as part of routine clinical follow-up for patients with active disease. This information will be medically validated and integrated into the database with the help of clinical research staff.
A telephone interview for annual follow-ups for patients whose absence of active disease no longer requires a systematic medical visit. This structured interview will be administered by telephone by the study's clinical research staff.
Self-administered or hetero-administered quality of life questionnaires (PEDS-QL), self-administered or hetero-administered treatment compliance questionnaires (Morisky's Score), and questionnaires on the aesthetic impact of treatments (Ferriman's Score). These questionnaires will be centralized and reported to the database by the study's clinical research staff.

Study Type

Observational

Enrollment (Estimated)

1180

Contacts and Locations

This section provides the contact details for those conducting the study, and information on where this study is being conducted.

Study Contact

Name: Vincent Guigonis, MD
Phone Number: +33 5 55 0563 58
Email: vincent.guigonis@unilim.fr

Study Contact Backup

Name: Claire Bahans, PhD
Phone Number: +33 5 55 05 63 58
Email: claire.bahans@chu-limoges.fr

Study Locations

France
- - Agen, France, 47000
    - Recruiting
    - CH d'Agen
    - Contact:
      
      Marie MIZZI-RODIER, MD
      
      Phone Number: +33 5 53 49 70 45
      
      Email: mizzim@ch-agen.fr
    - Principal Investigator:
      
      Marie MIZZI-RODIER, MD
  - Amiens, France, 80000
    - Recruiting
    - CHU D'amiens
    - Principal Investigator:
      
      Djamal-Dine DJEDDI, MD
    - Contact:
      
      Djamal-Dine DJEDDI, MD
      
      Phone Number: +33 3 22 08 76 72
      
      Email: djeddi.djamal-dine@chu-amiens.fr
  - Auxerre, France, 89000
    - Recruiting
    - CHU d'Auxerre
    - Contact:
      
      Bertrand SOTO, MD
      
      Phone Number: +33 3 86 48 45 29
      
      Email: bsoto@ch-auxerre.fr
    - Principal Investigator:
      
      Bertrand SOTO, MD
  - Bayonne, France, 64100
    - Recruiting
    - CH de la Côte Basque
    - Contact:
      
      Catherine DIDAILLER, MD
      
      Phone Number: +33 5 59 44 39 37
      
      Email: cdidailler@ch-cotebasque.fr
    - Principal Investigator:
      
      Catherine DIDAILLER, MD
  - Besançon, France, 25000
    - Recruiting
    - CHU de Besancon
    - Contact:
      
      François NOBILI, MD
      
      Phone Number: +33 3 81 21 88 15
      
      Email: fnobili@chu-besancon.fr
    - Principal Investigator:
      
      François NOBILI, MD
  - Bordeaux, France, 33000
    - Recruiting
    - CHU de Boredeaux
    - Contact:
      
      Jérôme HARAMBAT
      
      Phone Number: +33 5 57 82 19 96
      
      Email: jerome.harambat@chu-bordeaux.fr
    - Principal Investigator:
      
      Jérôme HARAMBAT, MD
  - Brest, France, 29609
    - Recruiting
    - CHU de Brest
    - Contact:
      
      Nadine JAY, MD
      
      Phone Number: +33 2 98 22 36 59
      
      Email: nadine.jay@chu-brest.fr
    - Principal Investigator:
      
      Nadine JAY, MD
  - Bron, France, 69500
    - Recruiting
    - HCL Lyon
    - Principal Investigator:
      
      Bruno Ranchin, MD
    - Contact:
      
      Bruno RANCHIN, MD
      
      Phone Number: 04 27 85 61 29
      
      Email: bruno.ranchin@chu-lyon.fr
  - Chambéry, France, 73011
    - Recruiting
    - Ch De Chambery
    - Contact:
      
      Sophie ALEGRET, MD
      
      Phone Number: +33 4 79 96 50 89
      
      Email: sophie.alegret@ch-metropole-savoie.fr
    - Principal Investigator:
      
      Sophie ALEGRET, MD
  - Clermont-Ferrand, France, 63000
    - Recruiting
    - Chu de Clermont Ferrand
    - Contact:
      
      Lucie BESSENAY, MD
      
      Phone Number: +33 4 73 75 22 43
      
      Email: lbessenay@chu-clermontferrand.fr
    - Principal Investigator:
      
      Lucie BESSENAY, MD
  - Dijon, France, 21079
    - Recruiting
    - CHU de DIJON
    - Contact:
      
      Megan NALLET-AMATE, MD
      
      Phone Number: +33 3 80 29 33 57
      
      Email: megan.nallet-amate@chu-dijon.fr
    - Principal Investigator:
      
      Megan NALLET-AMATE, MD
  - Foix, France, 09000
    - Recruiting
    - CH du Val d'Ariège
    - Principal Investigator:
      
      Lucas PERCHERON, MD
    - Contact:
      
      Lucas PERCHERON, MD
      
      Phone Number: +33 5 61 03 33 59
      
      Email: Lucas.PERCHERON@chi-val-ariege.fr
  - La Rochelle, France, 17019
    - Recruiting
    - CH de la Rochelle
    - Contact:
      
      Florian MANCA BARAYRE, MD
      
      Phone Number: +33 5 46 45 52 65
      
      Email: florian.manca@ght-atlantique17.fr
    - Principal Investigator:
      
      Florian MANCA BARAYRE, MD
  - La Tronche, France, 38700
    - Recruiting
    - Chu de Grenoble
    - Contact:
      
      Camille ALLIROT, MD
      
      Phone Number: +33 4 76 76 81 34
      
      Email: callirot@chu-grenoble.fr
    - Principal Investigator:
      
      Camille ALLIROT, MD
  - Le Chesnay, France, 78150
    - Recruiting
    - CH de Versaille
    - Contact:
      
      Sylvie NATHANSON, MD
      
      Phone Number: +33 1 39 63 92 14
      
      Email: snathanson@ch-versailles.fr
    - Principal Investigator:
      
      Sylvie NATHANSON, MD
  - Lille, France, 59037
    - Recruiting
    - CHU de Lille - Hôpital Jeanne de Flandre
    - Contact:
      
      Charlotte SAMAILLE, MD
      
      Phone Number: +33 3 20 44 50 70
      
      Email: Charlotte.SAMAILLE@CHRU-LILLE.FR
    - Principal Investigator:
      
      Charlotte SAMAILLE, MD
  - Limoges, France, 87 042
    - Recruiting
    - Limoges Hospital
    - Contact:
      
      Vincent GUIGONIS, MD
      
      Phone Number: +33 5 55 05 63 58
      
      Email: vincent.guigonis@unilim.fr
    - Principal Investigator:
      
      Vincent GUIGONIS, MD
  - Marseille, France, 13385
    - Recruiting
    - CHU de Marseille - Timone enfants
    - Principal Investigator:
      
      Caroline ROUSSET-ROUVIERE, MD
    - Contact:
      
      Caroline ROUSSET-ROUVIERE, MD
      
      Phone Number: +33 4 91 38 80 50
      
      Email: caroline.rousset-rouviere@ap-hm.fr
  - Montpellier, France, 34090
    - Recruiting
    - CHU de Montpellier - Hôpital Arnaud de Villeneuve
    - Contact:
      
      Lydia ICHAY, MD
      
      Phone Number: 04 67 33 66 43
      
      Email: l-ichay@chu-montpellier.fr
    - Principal Investigator:
      
      Lydia ICHAY, MD
  - Mâcon, France, 71018
    - Recruiting
    - CH de Macon
    - Contact:
      
      Laurence MARTINAT, MD
      
      Phone Number: 03 85 27 54 24
      
      Email: lamartinat@ch-macon.fr
    - Principal Investigator:
      
      Laurence MARTINAT, MD
  - Nancy, France, 54500
    - Recruiting
    - CHU de Nancy
    - Principal Investigator:
      
      Isabelle VRILLON, MD
    - Contact:
      
      Isabelle VRILLON, MD
      
      Phone Number: +33 3 83 15 47 41
      
      Email: i.vrillon@chru-nancy.fr
  - Nantes, France, 44093
    - Recruiting
    - Chu de Nantes
    - Contact:
      
      Gwenaëlle ROUSSEY, MD
      
      Phone Number: +33 2 40 08 36 60
      
      Email: gwenaelle.roussey@chu-nantes.fr
    - Principal Investigator:
      
      Gwenaëlle ROUSSEY, MD
  - Nice, France, 06200
    - Recruiting
    - CHU de Nice - Hopital Larchet
    - Contact:
      
      Julie BERNARDOR, MD
      
      Phone Number: +33 4 92 03 63 65
      
      Email: bernardor.j@chu-nice.fr
    - Principal Investigator:
      
      Julie BERNARDOR, MD
  - Nîmes, France, 30900
    - Recruiting
    - CHU de Nîmes
    - Principal Investigator:
      
      Massimo DI MAIO, MD
    - Contact:
      
      Massimo DI MAIO, MD
      
      Phone Number: +33 4 66 68 38 39
      
      Email: massimo.dimaio@chu-nimes.fr
  - Paris, France, 75012
    - Recruiting
    - AP-HP Trousseau
    - Contact:
      
      Cyrielle PARMENTIER, MD
      
      Phone Number: +33 1 71 73 85 25
      
      Email: cyrielle.parmentier@aphp.fr
    - Principal Investigator:
      
      Cyrielle PARMENTIER, MD
  - Paris, France, 75019
    - Recruiting
    - AP-HP Robert Debré
    - Contact:
      
      Claire DOSSIER, MD
      
      Phone Number: +33 1 40 03 24 67
      
      Email: claire.dossier@aphp.fr
    - Principal Investigator:
      
      Claire DOSSIER, MD
  - Paris, France, 75743
    - Recruiting
    - AP-HP Necker
    - Principal Investigator:
      
      Olivia BOYER, MD
    - Contact:
      
      Olivia BOYER, MD
      
      Phone Number: +33 1 44 49 44 63
      
      Email: olivia.boyer@aphp.fr
  - Pau, France, 64000
    - Recruiting
    - CH de Pau
    - Contact:
      
      Adeline GIRAUDON
      
      Phone Number: +33 5 59 92 47 82
      
      Email: adeline.giraudon@ch-pau.fr
    - Principal Investigator:
      
      Adeline GIRAUDON, MD
  - Perpignan, France, 66000
    - Recruiting
    - CH de Perpignan
    - Contact:
      
      Agnès CHEVALIER, MD
      
      Phone Number: +33 4 68 61 86 95
      
      Email: agnes.chevalier@ch-perpignan.fr
    - Principal Investigator:
      
      Agnès CHEVALIER, MD
  - Poitiers, France, 86000
    - Recruiting
    - Chu de Poitiers
    - Contact:
      
      Tackwa KHALIFEH
      
      Phone Number: +33 5 49 44 43 22
      
      Email: Tackwa.KHALIFEH@chu-poitiers.fr
    - Principal Investigator:
      
      Tackwa KHALIFEH, MD
  - Pringy, France, 74374
    - Recruiting
    - CH d'Annecy
    - Contact:
      
      Camille BEAUFILS, MD
      
      Phone Number: +33 4 50 63 63 24
      
      Email: cbeaufils@ch-annecygenevois.fr
    - Principal Investigator:
      
      Camille BEAUFILS, MD
  - Périgueux, France, 24000
    - Recruiting
    - CH de Périgueux
    - Contact:
      
      Paul VERGNAUD, MD
      
      Phone Number: +33 5 53 45 26 92
      
      Email: paul.vergnaud@ch-perigueux.fr
    - Principal Investigator:
      
      Paul VERGNAUD, MD
  - Reims, France, 57092
    - Recruiting
    - CHU de Reims
    - Contact:
      
      Christine PIETREMENT, MD
      
      Phone Number: +33 3 26 78 70 07
      
      Email: cpietrement@chu-reims.fr
    - Principal Investigator:
      
      Christine PIETREMENT, MD
  - Rennes, France, 35203
    - Recruiting
    - CHU de Rennes
    - Contact:
      
      Amélie RYCKEWAERT, MD
      
      Phone Number: +33 2 99 26 71 14
      
      Email: Amelie.RYCKEWAERT@chu-rennes.fr
    - Principal Investigator:
      
      Amélie RYCKEWAERT, MD
  - Roanne, France, 42300
    - Not yet recruiting
    - CH de ROANNE
    - Contact:
      
      Catherine CLAVEL, MD
      
      Phone Number: +33 4 77 44 30 94
      
      Email: catherine.clavel@ch-roanne.fr
    - Principal Investigator:
      
      Catherine CLAVEL, MD
  - Roubaix, France, 59100
    - Recruiting
    - CH de Roubaix
    - Contact:
      
      Marie-Hélène PIERRE, MD
      
      Phone Number: +33 3 20 99 31 31
      
      Email: marie-helene.pierre@ch-roubaix.fr
    - Principal Investigator:
      
      Marie-Hélène PIERRE, MD
  - Rouen, France, 76031
    - Recruiting
    - CHU de ROUEN
    - Contact:
      
      Edouard MARTINEZ CASADO, MD
      
      Phone Number: +33 6 87 95 63 88
      
      Email: e.martinez-casado@chu-rouen.fr
    - Principal Investigator:
      
      Edouard MARTINEZ CASADO, MD
  - Saint-Priest-en-Jarez, France, 42270
    - Recruiting
    - CHU de Saint-Etienne
    - Contact:
      
      Antonio AZZI, MD
      
      Phone Number: +33 4 77 12 09 76
      
      Email: antonio.azzi@chu-st-etienne.fr
    - Principal Investigator:
      
      Antonio AZZI, MD
  - Sallanches, France, 74700
    - Terminated
    - CH de Sallanches
  - Strasbourg, France, 67200
    - Recruiting
    - CHRU de Strasbourg
    - Principal Investigator:
      
      Ariane Zaloszyc, MD
    - Contact:
      
      Ariane ZALOSZYC, MD
      
      Phone Number: +33 3 88 12 77 28
      
      Email: ariane.zaloszyc@chru-strasbourg.fr
  - Toulon, France, 83056
    - Recruiting
    - CH de Toulon
    - Contact:
      
      Justine PERRIN, MD
      
      Phone Number: +33 4 94 14 57 63
      
      Email: justine.perrin@ch-toulon.fr
    - Principal Investigator:
      
      Justine PERRIN, MD
  - Toulouse, France, 31300
    - Recruiting
    - CHU de Toulouse
    - Contact:
      
      Stéphanie COGNET-TELLIER, MD
      
      Phone Number: +33 5 61 32 20 12
      
      Email: tellier.s@chu-toulouse.fr
    - Principal Investigator:
      
      Stéphanie COGNET-TELLIER, MD
  - Tours, France, 37000
    - Recruiting
    - CHU de Tours
    - Contact:
      
      Elodie MERIEAU, MD
      
      Phone Number: +33 2 47 47 47 54
      
      Email: e.merieau@chu-tours.fr
    - Principal Investigator:
      
      Elodie MERIEAU, MD
  - Vannes, France, 56000
    - Not yet recruiting
    - CH de Vannes
    - Contact:
      
      Josselin BERNARD, MD
      
      Phone Number: +33 2 97 01 41 60
      
      Email: josselin.bernard@ghba.fr
    - Principal Investigator:
      
      Josselin BERNARD, MD
  - Villefranche-sur-Saône, France, 69655
    - Recruiting
    - CH de Villefranche
    - Contact:
      
      Guillaume ESTRALLET, MD
      
      Phone Number: +33 4 74 09 28 54
      
      Email: gmestrallet@lhopitalnordouest.fr
    - Principal Investigator:
      
      Guillaume ESTRALLET, MD
  - Voiron, France, 38500
    - Recruiting
    - CH de Voiron
    - Contact:
      
      Antje KNAPKE
      
      Phone Number: +33 4 76 15 64 30
      
      Email: pediatrie.knapke@ch-voiron.fr
    - Principal Investigator:
      
      Antje KNAPKE, MD
Reunion
- - Saint-Denis, Reunion, 97400
    - Recruiting
    - CHU de La Réunion - Félix Guyon
    - Contact:
      
      Olivier DUNAND, MD
      
      Phone Number: +33 2 62 90 56 31
      
      Email: olivier.dunand@chu-reunion.fr
    - Principal Investigator:
      
      Olivier DUNAND, MD
  - Saint-Pierre, Reunion, 97448
    - Recruiting
    - CHU de la réunion
    - Contact:
      
      Hugues FLODROPS, MD
      
      Phone Number: +262 2 62 35 91 43
      
      Email: hugues.flodrops@chu-reunion.fr
    - Principal Investigator:
      
      Hugues FLODROPS, MD

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Eligibility Criteria

Ages Eligible for Study

No older than 18 years (Child, Adult)

Accepts Healthy Volunteers

Sampling Method

Non-Probability Sample

Study Population

Pediatric idiopathic nephrotic syndrome

Description

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

Study Plan

This section provides details of the study plan, including how the study is designed and what the study is measuring.

How is the study designed?

Design Details

Number of groups / cohorts

Cohorts and Interventions

Group / Cohort	Intervention / Treatment
Inclusion and follow up of pediatric patients Inclusion and follow up of pediatric patients with an idiopathic nephrotic syndrome, from the beginning of the disease to 18 years old or transfer of the follow-up to a nephrology unit for adults. 130 new patients are expected to be included on an annual basis.	Other: 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).

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Number of cases included in the cohort and description of their characteristics Time Frame: 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	2 years

Collaborators and Investigators

This is where you will find people and organizations involved with this study.

Sponsor

University Hospital, Limoges

Investigators

Principal Investigator: Vincent Guigonis, MD, University Hospital, Limoges

Publications and helpful links

The person responsible for entering information about the study voluntarily provides these publications. These may be about anything related to the study.

General Publications

Bahans C, Boyer O, Dunand O, Parmentier C, Ranchin B, Roussey G, Samaille C, Tellier S, Vrillon I, Preka E, Meriguet T, Dubrasquet A, Ichay L, Clave S, Bernardor J, Merieau E, Dossier C, Guigonis V. 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. Pediatr Nephrol. 2025 Jul;40(7):2225-2238. doi: 10.1007/s00467-025-06676-7. Epub 2025 Mar 3.

Study record dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Major Dates

Study Start (Actual)

March 13, 2020

Primary Completion (Estimated)

January 1, 2030

Study Completion (Estimated)

January 1, 2048

Study Registration Dates

First Submitted

December 17, 2019

First Submitted That Met QC Criteria

December 17, 2019

First Posted (Actual)

December 23, 2019

Study Record Updates

Last Update Posted (Actual)

March 13, 2026

Last Update Submitted That Met QC Criteria

March 11, 2026

Last Verified

March 1, 2026

More Information

Terms related to this study

Keywords

Cohort - Idiopathic nephrotic syndrome - child

Additional Relevant MeSH Terms

Other Study ID Numbers

87RI19_0006

Plan for Individual participant data (IPD)

Plan to Share Individual Participant Data (IPD)?

Drug and device information, study documents

Studies a U.S. FDA-regulated drug product

Studies a U.S. FDA-regulated device product

This information was retrieved directly from the website clinicaltrials.gov without any changes. If you have any requests to change, remove or update your study details, please contact register@clinicaltrials.gov. As soon as a change is implemented on clinicaltrials.gov, this will be updated automatically on our website as well.

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A National Prospective Cohort of Patients With Idiopathic Nephrotic Syndrome Beginning in Childhood. (PIN'SNP)

Study Overview

Status

Conditions

Intervention / Treatment

Detailed Description

Study Type

Enrollment (Estimated)

Contacts and Locations

Study Contact

Study Contact Backup

Study Locations

Participation Criteria

Eligibility Criteria

Ages Eligible for Study

Accepts Healthy Volunteers

Sampling Method

Study Population

Description

Study Plan

How is the study designed?

Design Details

Number of groups / cohorts

Cohorts and Interventions

Group / Cohort

Intervention / Treatment

What is the study measuring?

Primary Outcome Measures

Outcome Measure

Measure Description

Time Frame

Collaborators and Investigators

Sponsor

Investigators

Publications and helpful links

General Publications

Study record dates

Study Major Dates

Study Start (Actual)

Primary Completion (Estimated)

Study Completion (Estimated)

Study Registration Dates

First Submitted

First Submitted That Met QC Criteria

First Posted (Actual)

Study Record Updates

Last Update Posted (Actual)

Last Update Submitted That Met QC Criteria

Last Verified

More Information

Terms related to this study

Keywords

Additional Relevant MeSH Terms

Other Study ID Numbers

Plan for Individual participant data (IPD)

Plan to Share Individual Participant Data (IPD)?

Drug and device information, study documents

Studies a U.S. FDA-regulated drug product

Studies a U.S. FDA-regulated device product

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Sponsors and Collaborators

Medical Conditions

Drug Interventions

CROs by country

CROs in Hong Kong

Conditions

Rare Diseases

Drug Interventions

Dietary Supplements

Sponsor/Collaborators

Locations