International registry and biobank for patients with peripheral neuroblastic tumors

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

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.

Why it matters

Who can join: the full rules

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 it's running

• Fakultni nemocnice v Motole
  Prague, Czechia Recruiting
• CHU Amiens
  Amiens, France Recruiting
• Chu Angers
  Angers, France Recruiting
• Hôpital Jean Minjoz
  Besançon, France Recruiting
• Hôpital des enfants
  Bordeaux, France Recruiting
• Chru Brest
  Brest, France Recruiting

Study contacts

• Study coordinator: Gudrun Schleiermacher, MD,PhD
• Email: gudrun.schleiermacher@curie.fr
• Phone: 0144324554

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How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.