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International registry and biobank for patients with peripheral neuroblastic tumors

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

Not applicable Interventional Institut Curie · NCT05192980

This study is setting up a global database and biobank for patients with peripheral neuroblastic tumors to gather important health information and samples that can help improve future treatments.

Quick facts

PhaseNot applicable
Study typeInterventional
Enrollment600 (estimated)
SexAll
SponsorInstitut Curie Academic / other
Locations38 sites (Prague and 37 other locations)
Trial IDNCT05192980 on ClinicalTrials.gov

What this trial studies

The SIOPEN BIOPORTAL is a prospective, non-therapeutic international initiative designed to create a comprehensive registry linked to a virtual biobank for patients diagnosed with peripheral neuroblastic tumors, including neuroblastoma, ganglioneuroblastoma, and ganglioneuroma. This study aims to collect clinical annotations, biological and genetic data, and information on biospecimen locations while ensuring compliance with GDPR regulations. By facilitating data and sample management across borders, the study aims to enhance translational and clinical research, ultimately supporting future precision medicine programs based on improved biological characterization and patient stratification.

Who should consider this trial

Good fit: Ideal candidates for this study are patients diagnosed with ganglioneuroma, ganglioneuroblastoma, or neuroblastoma at initial diagnosis or during relapse/progression.

Not a fit: Patients with olfactory neuroblastoma or central nervous system neuroblastoma will not benefit from this study.

Why it matters

Potential benefit: If successful, this initiative could significantly enhance the understanding and treatment of peripheral neuroblastic tumors through improved data sharing and patient stratification.

How similar studies have performed: Other studies have shown success in similar approaches, particularly in enhancing data sharing and patient management in oncology.

Eligibility criteria

Show full inclusion / exclusion criteria 
Inclusion Criteria:

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)

Where this trial is running

Prague and 37 other locations

Study contacts

How to participate

  1. Review the eligibility criteria above with your treating physician.
  2. Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
  3. Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.
View on ClinicalTrials.gov → Find more trials like this →
Conditions NeuroblastomaGanglioneuroblastomaGanglioneuroma
Last reviewed 2026-06-13 by the Find a Trial editorial team. Information on this page is for educational purposes and is not medical advice. Always consult qualified healthcare professionals about clinical trial participation.