Neoplasms

All Conditions

Rare Diseases

Neuroblastoma

Ganglioneuroblastoma

Ganglioneuroma

Neuroectodermal Tumors, Primitive, Peripheral

Neuroectodermal Tumors

Neuroectodermal Tumors, Primitive

Neoplasms, Neuroepithelial

Neoplasms, Germ Cell and Embryonal

Neoplasms by Histologic Type

Neoplasms, Glandular and Epithelial

Neoplasms, Nerve Tissue

Gangliocytoma

Neuroepithelioma

Additional blood sampling (not mandatory)

No Intervention NA

Gudrun Schleiermacher, MD,PhD

Priyanka Devi-Marulkar, PharmD

Antoine GOURMEL, MD

Stéphanie PROUST, MD

Veronique LAITHIER, MD

Julie TANDONNET, MD

Liana CARAUSU, MD

Damien BODET, MD

Justyna KANOLD, MD

Claire BRIANDET, MD

Cécile PERRET, MD

Anne-Sophie DEFACHELLES, MD

Benoît DUMONT, MD

Carole COZE, MD

Tasnime AKBARALY, MD

Estelle THEBAUD, MD

Joy BENADIBA, MD

Gudrun SCHLEIERMACHER, MD

Arnaud PETIT, MD

Chrystelle DUPRAZ, MD

Claire PLUCHART, MD

Sophie TAQUE, MD

Aude MARIE CARDINE, MD

Claire BERGER, MD

Sarah JANNIER, MD

Marion GAMBART, MD

Julien LEJEUNE, MD

Ludovic MANSUY, MD

Claudia PASQUALINI, MD

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.

SIOPEN BIOPORTAL, An International Registry Linked to a Virtual Biobank for Patients With Peripheral Neuroblastic Tumours

Registry Outcome: Rate of patients having their clinical data registered throughout their treatment and follow-up from the total of patients registered

Virtual Biobank Outcome: Rate of patients for whom information on biological samples/material collected and stored in SIOPEN is available from the total of patients registered

Investigation of the impact of the variables currently used for assignment to risk groups and treatment stratification (MYCN Status, ALK Status, stage, age, primary tumor site) on progression-free survival (PFS) using the Kaplan-Meier method

Investigation of the impact of the variables currently used for assignment to risk groups and treatment stratification (MYCN Status, ALK Status, stage, age, primary tumor site) on overall-survival (OS) using the Kaplan-Meier method

Institut Curie

Study title	NCT ID	Conditions	Interventions	Eligibility	Organization	Link
SIOPEN BIOPORTAL, An International Registry Linked to a Virtual Biobank for Patients With Peripheral Neuroblastic Tumours	NCT05192980	Neuroblastoma Ganglioneurobla... Ganglioneuroma	No Intervention...	-	Institut Curie
SIOPEN BIOPORTAL, An International Registry Linked to a Virtual Biobank for Patients With Peripheral Neuroblastic Tumours	NCT05192980	Neuroblastoma Ganglioneurobla... Ganglioneuroma	No Intervention...	-	Institut Curie

Spots Global Cancer Trial Database for no intervention na