BIOPORTAL - An International Registry Linked to a Virtual Biobank for Patients With Peripheral Neuroblastic Tumours (BIOPORTAL)
Chief Investigator: Dr Lucas Moreno
Sponsor: SIOPEN
Funders / Charity: SIOPEN
Aims of the study
To provide a GDPR-compliant framework to collect basic clinical annotations, biological and genetic features and information about biospecimens.
To develop an international registry linked to a virtual biobank.
To support precision medicine programmes by enabling better stratification and biological characterization.
Study design
Prospective, observational (non-interventional), multi-centre, international registry linked to a virtual biobank. Approx. 600 participants planned per year.
Patient eligibility
Inclusion Criteria
Patients with peripheral neuroblastic tumours (PNT): ganglioneuroma, ganglioneuroblastoma, or neuroblastoma.
At diagnosis or relapse/progression if not yet registered.
Written informed consent (patient or legal representative).
Non-Inclusion Criteria
(Adult) Patients with olfactory neuroblastoma.
Central nervous system (CNS) neuroblastoma (as per WHO classification).
Treatment Arms
Non-interventional, biosampling only (data and sample collection). Targeted patients: PNTs (GN, GNB, NB).
Outcome measures / Questions to be answered
1Create a pan-European registry of PNT patients with linked biospecimens.
Enable translational research linking clinical, biological and genetic data.
Provide data infrastructure for future precision medicine studies.
Ensure GDPR compliance for data and biosample sharing.
Current study status
Start date: 02 November 2023
Recruitment period: 5 years
Estimated completion: 02 November 2028
Expected recruitment: 600 participants per year
Actual recruitment: 116 (last update Oct 2025)
STATUS of BIOPORTAL TRIAL: OPEN & Recruiting
Coordinating Centre
Institut Curie, France
Participating Centres
Multiple sites in France (27), Norway (1), Switzerland (9), Lithuania (1) and the Czech Republic (1) (39 sites as of Oct 2025).
Funding and Support
Primary Sponsor: SIOPEN
Other funders: (To be updated)
CONSORTIUM
Embedded in the SIOPEN network (International Society of Paediatric Oncology Europe – Neuroblastoma). Collaboration with RD-Connect GPAP for data integration.
