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AzTrials

Idiopathic Nephrotic SyndromePIN'SNPNCT04207580

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

An observational study of Idiopathic Nephrotic Syndrome, run by University Hospital, Limoges at 48 sites in 2 countries.

Recruiting

Looking for participants now. Contact the study team or a site below to ask about taking part.

Sites and contacts
Official record
Search all trials

Trial 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… Read more about this study

Who is it for?
Ages Up to 18 years
Conditions the study is for
Idiopathic Nephrotic Syndrome
What is being tested?
Inclusion and follow up of pediatric patients with an idiopathic nephrotic syndrome,
How many people
1,180 participants
Where
48 sitesin 2 countries
Study dates
13 Mar 2020to Jan 2048
Phase
Observational
Are there results?
Not yet: the study is under way

Key requirements

Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.

  • Ages Up to 18 years
  • All sexes
  • No healthy volunteers
  • Child, Adult

Study population: Pediatric idiopathic nephrotic syndrome

Who may be able to join

  • 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.

Who cannot join

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

Trial locations and contacts

48 sites in 2 countries. Contact the study team or a site near you to ask about taking part.

Vincent Guigonis, MD contact

+33 5 55 0563 58

vincent.guigonis@unilim.fr

Claire Bahans, PhD contact

+33 5 55 05 63 58

claire.bahans@chu-limoges.fr

48 sites in 2 countries

France46 sites, 45 recruiting

  • CH d'Agen

    Agen, 47000

    Marie MIZZI-RODIER, MD, +33 5 53 49 70 45, mizzim@ch-agen.fr

    Marie MIZZI-RODIER, MD

    Recruiting

  • CHU d'Amiens

    Amiens, 80000

    Djamal-Dine DJEDDI, MD, +33 3 22 08 76 72, djeddi.djamal-dine@chu-amiens.fr

    Djamal-Dine DJEDDI, MD

    Recruiting

  • CHU d'Auxerre

    Auxerre, 89000

    Bertrand SOTO, MD, +33 3 86 48 45 29, bsoto@ch-auxerre.fr

    Bertrand SOTO, MD

    Recruiting

  • CH de la côte basque

    Bayonne, 64100

    Catherine DIDAILLER, MD, +33 5 59 44 39 37, cdidailler@ch-cotebasque.fr

    Catherine DIDAILLER, MD

    Recruiting

  • CHU de Besançon

    Besançon, 25000

    François NOBILI, MD, +33 3 81 21 88 15, fnobili@chu-besancon.fr

    François NOBILI, MD

    Recruiting

  • CHU de Boredeaux

    Bordeaux, 33000

    Jérôme HARAMBAT, +33 5 57 82 19 96, jerome.harambat@chu-bordeaux.fr

    Jérôme HARAMBAT, MD

    Recruiting

  • CHU de Brest

    Brest, 29609

    Nadine JAY, MD, +33 2 98 22 36 59, nadine.jay@chu-brest.fr

    Nadine JAY, MD

    Recruiting

  • HCL Lyon

    Bron, 69500

    Bruno RANCHIN, MD, 04 27 85 61 29, bruno.ranchin@chu-lyon.fr

    Bruno RANCHIN, MD

    Recruiting

  • CH de Chambéry

    Chambéry, 73011

    Sophie ALEGRET, MD, +33 4 79 96 50 89, sophie.alegret@ch-metropole-savoie.fr

    Sophie ALEGRET, MD

    Recruiting

  • CHU de Clermont Ferrand

    Clermont-Ferrand, 63000

    Lucie BESSENAY, MD, +33 4 73 75 22 43, lbessenay@chu-clermontferrand.fr

    Lucie BESSENAY, MD

    Recruiting

  • CHU de Dijon

    Dijon, 21079

    Megan NALLET-AMATE, MD, +33 3 80 29 33 57, megan.nallet-amate@chu-dijon.fr

    Megan NALLET-AMATE, MD

    Recruiting

  • CH du Val d'Ariège

    Foix, 09000

    Lucas PERCHERON, MD, +33 5 61 03 33 59, Lucas.PERCHERON@chi-val-ariege.fr

    Lucas PERCHERON, MD

    Recruiting

  • CH de la Rochelle

    La Rochelle, 17019

    Florian MANCA BARAYRE, MD, +33 5 46 45 52 65, florian.manca@ght-atlantique17.fr

    Florian MANCA BARAYRE, MD

    Recruiting

  • CHU de Grenoble

    La Tronche, 38700

    Camille ALLIROT, MD, +33 4 76 76 81 34, callirot@chu-grenoble.fr

    Camille ALLIROT, MD

    Recruiting

  • CH de Versaille

    Le Chesnay, 78150

    Sylvie NATHANSON, MD, +33 1 39 63 92 14, snathanson@ch-versailles.fr

    Sylvie NATHANSON, MD

    Recruiting

  • CHU de Lille - Hôpital Jeanne de Flandre

    Lille, 59037

    Charlotte SAMAILLE, MD, +33 3 20 44 50 70, Charlotte.SAMAILLE@CHRU-LILLE.FR

    Charlotte SAMAILLE, MD

    Recruiting

  • Limoges Hospital

    Limoges, 87 042

    Vincent GUIGONIS, MD, +33 5 55 05 63 58, vincent.guigonis@unilim.fr

    Vincent GUIGONIS, MD

    Recruiting

  • CH de Macon

    Mâcon, 71018

    Laurence MARTINAT, MD, 03 85 27 54 24, lamartinat@ch-macon.fr

    Laurence MARTINAT, MD

    Recruiting

  • CHU de Marseille - Timone enfants

    Marseille, 13385

    Caroline ROUSSET-ROUVIERE, MD, +33 4 91 38 80 50, caroline.rousset-rouviere@ap-hm.fr

    Caroline ROUSSET-ROUVIERE, MD

    Recruiting

  • CHU de Montpellier - Hôpital Arnaud de Villeneuve

    Montpellier, 34090

    Lydia ICHAY, MD, 04 67 33 66 43, l-ichay@chu-montpellier.fr

    Lydia ICHAY, MD

    Recruiting

  • CHU de Nancy

    Nancy, 54500

    Isabelle VRILLON, MD, +33 3 83 15 47 41, i.vrillon@chru-nancy.fr

    Isabelle VRILLON, MD

    Recruiting

  • CHU de Nantes

    Nantes, 44093

    Gwenaëlle ROUSSEY, MD, +33 2 40 08 36 60, gwenaelle.roussey@chu-nantes.fr

    Gwenaëlle ROUSSEY, MD

    Recruiting

  • CHU de Nice - Hopital Larchet

    Nice, 06200

    Julie BERNARDOR, MD, +33 4 92 03 63 65, bernardor.j@chu-nice.fr

    Julie BERNARDOR, MD

    Recruiting

  • CHU de Nimes

    Nîmes, 30900

    Massimo DI MAIO, MD, +33 4 66 68 38 39, massimo.dimaio@chu-nimes.fr

    Massimo DI MAIO, MD

    Recruiting

  • AP-HP Trousseau

    Paris, 75012

    Cyrielle PARMENTIER, MD, +33 1 71 73 85 25, cyrielle.parmentier@aphp.fr

    Cyrielle PARMENTIER, MD

    Recruiting

  • AP-HP Robert Debré

    Paris, 75019

    Claire DOSSIER, MD, +33 1 40 03 24 67, claire.dossier@aphp.fr

    Claire DOSSIER, MD

    Recruiting

  • AP-HP Necker

    Paris, 75743

    Olivia BOYER, MD, +33 1 44 49 44 63, olivia.boyer@aphp.fr

    Olivia BOYER, MD

    Recruiting

  • CH de Pau

    Pau, 64000

    Adeline GIRAUDON, +33 5 59 92 47 82, adeline.giraudon@ch-pau.fr

    Adeline GIRAUDON, MD

    Recruiting

  • CH de Périgueux

    Périgueux, 24000

    Paul VERGNAUD, MD, +33 5 53 45 26 92, paul.vergnaud@ch-perigueux.fr

    Paul VERGNAUD, MD

    Recruiting

  • CH de Perpignan

    Perpignan, 66000

    Agnès CHEVALIER, MD, +33 4 68 61 86 95, agnes.chevalier@ch-perpignan.fr

    Agnès CHEVALIER, MD

    Recruiting

  • CHU de Poitiers

    Poitiers, 86000

    Tackwa KHALIFEH, +33 5 49 44 43 22, Tackwa.KHALIFEH@chu-poitiers.fr

    Tackwa KHALIFEH, MD

    Recruiting

  • CH d'Annecy

    Pringy, 74374

    Camille BEAUFILS, MD, +33 4 50 63 63 24, cbeaufils@ch-annecygenevois.fr

    Camille BEAUFILS, MD

    Recruiting

  • CHU de Reims

    Reims, 57092

    Christine PIETREMENT, MD, +33 3 26 78 70 07, cpietrement@chu-reims.fr

    Christine PIETREMENT, MD

    Recruiting

  • CHU de Rennes

    Rennes, 35203

    Amélie RYCKEWAERT, MD, +33 2 99 26 71 14, Amelie.RYCKEWAERT@chu-rennes.fr

    Amélie RYCKEWAERT, MD

    Recruiting

  • CH de Roanne

    Roanne, 42300

    Catherine CLAVEL, MD, +33 4 77 44 30 94, catherine.clavel@ch-roanne.fr

    Catherine CLAVEL, MD

    Not yet recruiting

  • CH de Roubaix

    Roubaix, 59100

    Marie-Hélène PIERRE, MD, +33 3 20 99 31 31, marie-helene.pierre@ch-roubaix.fr

    Marie-Hélène PIERRE, MD

    Recruiting

  • CHU de Rouen

    Rouen, 76031

    Edouard MARTINEZ CASADO, MD, +33 6 87 95 63 88, e.martinez-casado@chu-rouen.fr

    Edouard MARTINEZ CASADO, MD

    Recruiting

  • CHU de Saint-Etienne

    Saint-Priest-en-Jarez, 42270

    Antonio AZZI, MD, +33 4 77 12 09 76, antonio.azzi@chu-st-etienne.fr

    Antonio AZZI, MD

    Recruiting

  • CH de Sallanches

    Sallanches, 74700

    Terminated

  • CHRU de Strasbourg

    Strasbourg, 67200

    Ariane ZALOSZYC, MD, +33 3 88 12 77 28, ariane.zaloszyc@chru-strasbourg.fr

    Ariane ZALOSZYC, MD

    Recruiting

  • CH de Toulon

    Toulon, 83056

    Justine PERRIN, MD, +33 4 94 14 57 63, justine.perrin@ch-toulon.fr

    Justine PERRIN, MD

    Recruiting

  • CHU de Toulouse

    Toulouse, 31300

    Stéphanie COGNET-TELLIER, MD, +33 5 61 32 20 12, tellier.s@chu-toulouse.fr

    Stéphanie COGNET-TELLIER, MD

    Recruiting

  • CHU de Tours

    Tours, 37000

    Elodie MERIEAU, MD, +33 2 47 47 47 54, e.merieau@chu-tours.fr

    Elodie MERIEAU, MD

    Recruiting

  • CH de Vannes

    Vannes, 56000

    Josselin BERNARD, MD, +33 2 97 01 41 60, josselin.bernard@ghba.fr

    Josselin BERNARD, MD

    Not yet recruiting

  • CH de Villefranche

    Villefranche-sur-Saône, 69655

    Guillaume ESTRALLET, MD, +33 4 74 09 28 54, gmestrallet@lhopitalnordouest.fr

    Guillaume ESTRALLET, MD

    Recruiting

  • CH de Voiron

    Voiron, 38500

    Antje KNAPKE, +33 4 76 15 64 30, pediatrie.knapke@ch-voiron.fr

    Antje KNAPKE, MD

    Recruiting

Other trials in France

Reunion2 sites, 2 recruiting

  • CHU de La Réunion - Félix Guyon

    Saint-Denis, 97400

    Olivier DUNAND, MD, +33 2 62 90 56 31, olivier.dunand@chu-reunion.fr

    Olivier DUNAND, MD

    Recruiting

  • CHU de la Réunion

    Saint-Pierre, 97448

    Hugues FLODROPS, MD, +262 2 62 35 91 43, hugues.flodrops@chu-reunion.fr

    Hugues FLODROPS, MD

    Recruiting

Other trials in Reunion

About this study

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.

Read the 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.
Being tested
Inclusion and follow up of pediatric patients with an idiopathic nephrotic syndrome,
Keywords
Cohort - Idiopathic nephrotic syndrome - child
Medical subject headings
Nephrosis, Lipoid

What participants receive

What participants receive. In a randomised study each person is assigned to one group by chance.

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

    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 groups in NCT04207580
Study groupRoleWhat they receive
Inclusion and follow up of pediatric patientsInclusion 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.
Receives: Other: Inclusion and follow up of pediatric patients with an idiopathic nephrotic syndrome,

What is being measured

The primary outcome is the main question the study is designed to answer.

  1. Number of cases included in the cohort and description of their characteristics

    • 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

    Measured: 2 years

Timeline

From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.

  1. First posted23 Dec 2019
  2. Study start13 Mar 2020
  3. Primary completionJan 2030 (estimated)
  4. Study completionJan 2048 (estimated)

Resources

More details

For doctors and researchers: how the study is designed, who runs it, and its registry IDs.

Study design
Study type
Observational
Observational model
Cohort
Time perspective
Prospective
Enrolment
1,180 participants (estimated)
IDs, dates and publications
ClinicalTrials.gov ID
NCT04207580
Sponsor's protocol ID
87RI19_0006
Acronym
PIN'SNP
Status last verified
Mar 2026
First submitted
17 Dec 2019
Last updated
13 Mar 2026
Results posted
No
Data monitoring committee
No
FDA-regulated drug
No
FDA-regulated device
No
Individual data sharing
No

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.

    PubMed 40032676

Questions about this trial

What is this clinical trial studying?

An observational study of Idiopathic Nephrotic Syndrome, run by University Hospital, Limoges at 48 sites in 2 countries.

The full registered description is in the About this study section and the official record.

Who may be eligible to take part?

The sponsor lists 6 inclusion and 1 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.

Is this clinical trial currently recruiting?

The record says: looking for participants now, as of the sponsor's last update on 13 Mar 2026. Status can change between updates, so confirm with the study contact before making plans.

Where is the study taking place?

The record lists 48 sites in France, Reunion. Whether a site is taking part right now should be confirmed with that site. See every site.

What are the possible benefits and risks?

They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.

Are results available for this study?

This study is still under way. Results are not available in the source record yet.

How can a doctor refer a patient or contact the research team?

Contact Vincent Guigonis, MD (+33 5 55 0563 58, vincent.guigonis@unilim.fr), or a site near the patient. AzTrials does not enrol participants or take referrals.

What does the primary outcome measure?

Number of cases included in the cohort and description of their characteristics (time frame: 2 years). It is what the study was designed to measure, not a finding.

Where can I read the original study information?

On the ClinicalTrials.gov record for NCT04207580, which also lists 1 linked publication.

Does a listing mean the treatment is approved or proven to work?

No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.

How often is this information updated?

AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 13 Mar 2026.

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