A National Prospective Cohort of Patients With Idiopathic Nephrotic Syndrome Beginning in Childhood.
PIN'SNP
1 other identifier
observational
1,180
2 countries
48
Brief 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.
Trial Health
Trial Health Score
Automated assessment based on enrollment pace, timeline, and geographic reach
participants targeted
Target at P75+ for all trials
Started Mar 2020
Longer than P75 for all trials
48 active sites
Health score is calculated from publicly available data and should be used for screening purposes only.
Trial Relationships
Click on a node to explore related trials.
Study Timeline
Key milestones and dates
First Submitted
Initial submission to the registry
December 17, 2019
CompletedFirst Posted
Study publicly available on registry
December 23, 2019
CompletedStudy Start
First participant enrolled
March 13, 2020
CompletedPrimary Completion
Last participant's last visit for primary outcome
January 1, 2030
ExpectedStudy Completion
Last participant's last visit for all outcomes
January 1, 2048
March 13, 2026
March 1, 2026
9.8 years
December 17, 2019
March 11, 2026
Conditions
Keywords
Outcome Measures
Primary Outcomes (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
2 years
Study Arms (1)
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.
Interventions
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).
Eligibility Criteria
Pediatric idiopathic nephrotic syndrome
You may qualify if:
- 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.
You may not qualify if:
- Refusal of the patient or legal representatives to participate in the cohort
Contact the study team to confirm eligibility.
Sponsors & Collaborators
Study Sites (48)
CH d'Agen
Agen, 47000, France
CHU d'Amiens
Amiens, 80000, France
CHU d'Auxerre
Auxerre, 89000, France
CH de la côte basque
Bayonne, 64100, France
CHU de Besançon
Besançon, 25000, France
CHU de Boredeaux
Bordeaux, 33000, France
CHU de Brest
Brest, 29609, France
HCL Lyon
Bron, 69500, France
CH de Chambéry
Chambéry, 73011, France
CHU de Clermont Ferrand
Clermont-Ferrand, 63000, France
CHU de Dijon
Dijon, 21079, France
CH du Val d'Ariège
Foix, 09000, France
CH de la Rochelle
La Rochelle, 17019, France
CHU de Grenoble
La Tronche, 38700, France
CH de Versaille
Le Chesnay, 78150, France
CHU de Lille - Hôpital Jeanne de Flandre
Lille, 59037, France
Limoges Hospital
Limoges, 87 042, France
CHU de Marseille - Timone enfants
Marseille, 13385, France
CH de Macon
Mâcon, 71018, France
CHU de Montpellier - Hôpital Arnaud de Villeneuve
Montpellier, 34090, France
CHU de Nancy
Nancy, 54500, France
CHU de Nantes
Nantes, 44093, France
CHU de Nice - Hopital Larchet
Nice, 06200, France
CHU de Nimes
Nîmes, 30900, France
AP-HP Trousseau
Paris, 75012, France
AP-HP Robert Debré
Paris, 75019, France
AP-HP Necker
Paris, 75743, France
CH de Pau
Pau, 64000, France
CH de Perpignan
Perpignan, 66000, France
CH de Périgueux
Périgueux, 24000, France
CHU de Poitiers
Poitiers, 86000, France
CH d'Annecy
Pringy, 74374, France
CHU de Reims
Reims, 57092, France
CHU de Rennes
Rennes, 35203, France
CH de Roanne
Roanne, 42300, France
CH de Roubaix
Roubaix, 59100, France
CHU de Rouen
Rouen, 76031, France
CHU de Saint-Etienne
Saint-Priest-en-Jarez, 42270, France
CH de Sallanches
Sallanches, 74700, France
CHRU de Strasbourg
Strasbourg, 67200, France
CH de Toulon
Toulon, 83056, France
CHU de Toulouse
Toulouse, 31300, France
CHU de Tours
Tours, 37000, France
CH de Vannes
Vannes, 56000, France
CH de Villefranche
Villefranche-sur-Saône, 69655, France
CH de Voiron
Voiron, 38500, France
CHU de La Réunion - Félix Guyon
Saint-Denis, 97400, Reunion
CHU de la Réunion
Saint-Pierre, 97448, Reunion
Related Publications (1)
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.
PMID: 40032676DERIVED
Biospecimen
Blood, urine, hair and nails will be collected at the beginning of the NIS (before starting immunosuppressive treatment).
MeSH Terms
Conditions
Condition Hierarchy (Ancestors)
Study Officials
- PRINCIPAL INVESTIGATOR
Vincent Guigonis, MD
University Hospital, Limoges
Central Study Contacts
Study Design
- Study Type
- observational
- Observational Model
- COHORT
- Time Perspective
- PROSPECTIVE
- Sponsor Type
- OTHER
- Responsible Party
- SPONSOR
Study Record Dates
First Submitted
December 17, 2019
First Posted
December 23, 2019
Study Start
March 13, 2020
Primary Completion (Estimated)
January 1, 2030
Study Completion (Estimated)
January 1, 2048
Last Updated
March 13, 2026
Record last verified: 2026-03
Data Sharing
- IPD Sharing
- Will not share