NCT05192980

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

• Status: Recruiting
• Phase: N/A
• Study type: Interventional
• Enrollment: 600 (estimated)
• Sponsor: Institut Curie · Academic / Other
• Sex: All
• Age: —
• Healthy volunteers: Not accepted

Summary

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.

Conditions

• Neuroblastoma
• Ganglioneuroblastoma
• Ganglioneuroma

Interventions

Type	Name	Description
OTHER	No Intervention NA	Additional blood sampling (not mandatory)

Timeline

• Start date: 2023-11-02
• Primary completion: 2038-11-02
• Completion: 2038-11-02
• First posted: 2022-01-14
• Last updated: 2025-07-22

Locations

38 sites across 4 countries: Czechia, France, Norway, Switzerland