International Registry and Virtual Biobank for Patients with Peripheral Neuroblastic Tumors Including Neuroblastoma, Ganglioneuroblastoma, and Ganglioneuroma

What this Trial Is About

Researchers are conducting the SIOPEN BIOPORTAL study, a prospective, non-therapeutic, multi-center international effort to develop a global Registry linked to a Virtual Biobank for patients diagnosed with peripheral neuroblastic tumors. These tumors include neuroblastoma, ganglioneuroblastoma, and ganglioneuroma. The study aims to create a GDPR-compliant system that collects clinical, biological, and genetic data along with information about biospecimen locations within countries of the SIOPEN network. The study does not involve therapeutic interventions but includes optional additional blood sampling. It focuses on gathering and managing clinical data and biological samples across borders to enhance research collaboration. This infrastructure will support future precision medicine programs by improving biological characterization, patient stratification, and therapeutic approaches based on the collected data. Participants will have their clinical information and biological sample data recorded, with progress monitored at six months. The study will also observe progression-free survival and overall survival at twelve months. This data collection will help researchers understand disease progression and support future clinical and translational research. The study is sponsored by Institut Curie and will continue until November 2038.

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