Registry of children with peripheral neuroblastic tumours and linked biobank
Collects clinical, genetic and tissue information from patients with neuroblastic tumours.
Plain-language title generated from the registry record
Registry title: SIOPEN BIOPORTAL, An International Registry Linked to a Virtual Biobank for Patients With Peripheral Neuroblastic Tumours
Key facts
- Where
- Amiens, Angers, Besançon, Bordeaux, Brest, Caen, Clermont-Ferrand, Dijon, Grenoble, Lille, Lyon, Marseille, Montpellier, Nantes, Nice, Paris, Poitiers, Reims, Rennes, Rouen, Saint-Etienne, Strasbourg, Toulouse, Tours, Vandœuvre-lès-Nancy, and Villejuif, FranceSee the 27 sites
Where in France
- CHU AmiensAmiens, FranceTaking people
- CHU AngersAngers, FranceTaking people
- Hopital Jean MinjozBesançon, FranceTaking people
- Hôpital des enfantsBordeaux, FranceTaking people
- CHRU BrestBrest, FranceTaking people
- CHU CAEN - Fédération de cancérologie - niveau 21Caen, FranceTaking people
- CHU D'Estaing de CLERMONT FERRANDClermont-Ferrand, FranceTaking people
- DIJON Hôpital d'enfantsDijon, FranceTaking people
- Chu GrenobleGrenoble, FranceTaking people
- Centre Oscar LambretLille, FranceTaking people
- Centre Leon BerardLyon, FranceTaking people
- Hôpital d'Enfants de la TimoneMarseille, FranceTaking people
- Hôpital Arnaud de VilleneuveMontpellier, FranceTaking people
- Chr NantesNantes, FranceTaking people
- CHU NiceNice, FranceTaking people
- Hôpital Armand-TrousseauParis, FranceTaking people
- Institut CurieParis, FranceTaking people
- Hôpital Jean BernardPoitiers, FranceNot yet recruiting
- CHU ReimsReims, FranceTaking people
- CHU Hopital SudRennes, FranceTaking people
- Hôpital Charles NicolleRouen, FranceTaking people
- Hôpital NordSaint-Etienne, FranceNot yet recruiting
- Hopital Hautepierre - CHU StrasbourgStrasbourg, FranceTaking people
- Hôpital des EnfantsToulouse, FranceTaking people
- Hôpital ClochevilleTours, FranceNot yet recruiting
- CHU NANCY- Hôpital d'EnfantsVandœuvre-lès-Nancy, FranceTaking people
- Institut Gustave RoussyVillejuif, FranceTaking people
Questions to ask the study team
- How often do I need to come in, and for how long each time?
- Are travel costs paid?
- Can I keep my own doctor?
- What happens if I want to stop?
Trial details
- Who runs it
- Institut Curie
- Trial code
- NCT05192980
- Record updated
- 22 July 2025
- Original description
The SIOPEN BIOPORTAL is a prospective non-therapeutic multi-centre international study aimed at developing an international Registry linked to a Virtual Biobank for all the patients with peripheral neuroblastic tumor within countries of the SIOPEN network. The overall aim of this study is to provide a GDPR-compliant framework to collect basic clinical annotations, biological and genetic features and information about the location on biospecimens for all the patients with a peripheral neuroblastic tumor including neuroblastoma, ganglioneuroblastoma and ganglioneuroma in the SIOPEN network.Read full original descriptionShow less
SIOPEN BIOPORTAL, An International Registry Linked to a Virtual Biobank for Patients With Peripheral Neuroblastic Tumours
The SIOPEN BIOPORTAL is a prospective non-therapeutic multi-centre international study aimed at developing an international Registry linked to a Virtual Biobank for all the patients with peripheral neuroblastic tumor within countries of the SIOPEN network. The overall aim of this study is to provide a GDPR-compliant framework to collect basic clinical annotations, biological and genetic features and information about the location on biospecimens for all the patients with a peripheral neuroblastic tumor including neuroblastoma, ganglioneuroblastoma and ganglioneuroma in the SIOPEN network.
This study will support data and sample management and intensify cross-borders data and sample sharing fostering translational and clinical research. The post-hoc hypothesis formulated based on the data generated in this study will be used as statistical basis for future precision medicine programs based on improved biological characterization, patient stratification and therapeutic management.
Inclusion: I-1. Patients with PNT: ganglioneuroma or ganglioneuroblastoma or neuroblastoma, I-2. At the time of initial diagnosis of neuroblastic tumour, or at relapse/progression if not yet registered I-3. Written patient informed consent, or parents or legal representative written informed consent and assent of the child, adolescent or young adult; Non-Inclusion Criteria:; R-1. (Adult) Patients with olfactory neuroblastoma R-2. Central nervous system (CNS) neuroblastoma (as per the WHO classification).