Registry of children with peripheral neuroblastic tumours and linked biobank
Collects clinical, genetic and tissue information from patients with neuroblastic tumours.
Key facts
- Who runs it
- Institut Curie
- Where
- Aarau, Basel, Bellinzona, Bern, Geneva, Lausanne, Lucerne, Sankt Gallen, and Zurich, SwitzerlandSee the 9 sitesAlso in 3 other countries, 29 sites
- Trial code
- Registry title
- SIOPEN BIOPORTAL, An International Registry Linked to a Virtual Biobank for Patients With Peripheral Neuroblastic Tumours
- Status
- Recruiting
- People taking part
- 600 people, planned
- Started
- 2 Nov 2023
- Expected to end
- 2 Nov 2038
- Type of study
- Interventional
- Treatments tested
- No Intervention NA
- Record updated
- 22 July 2025
Who can take part
AI summary
From the trial's eligibility criteria. Machine-read from the registry text on this page, so it can be wrong. The registry text below and the trial team decide who can take part.
The trial is looking for people of any age with a peripheral neuroblastic tumour (neuroblastoma, ganglioneuroblastoma or ganglioneuroma). It is a registry and does not test a treatment.
- Sex
- All sexes can join.
- Disease stage
- Neuroblastoma, ganglioneuroblastoma or ganglioneuroma, at first diagnosis or at relapse/progression if not yet registered.
Main reasons for not taking part
- Adult patients with olfactory neuroblastoma
- Central nervous system (CNS) neuroblastoma
- No written informed consent from the patient, parents or legal representative
The registry criteria, word for word
Show all 3 criteriaShow less
Who can take part
- 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 in Switzerland
Also in 3 other countries, 29 sites
- Kantonsspital Aarau AGAarau, SwitzerlandContact: Andreas Klein-Franke, MDTaking people
- Universitäts-Kinderspital beider Basel (UKBB)Basel, SwitzerlandContact: Nicolas von der Weid, MDTaking people
- Ospedale San GiovanniBellinzona, SwitzerlandContact: Mattia Rizzi, MDTaking people
- Inselspital BernBern, SwitzerlandContact: Miriam Diepold, MDTaking people
- HUG Hôpitaux Universitaires GenèveGeneva, SwitzerlandContact: Fabienne Gumy-Pause, MDTaking people
- CHUV (centre hospitalier universitaire vaudois)Lausanne, SwitzerlandContact: Raffaele Renella, MDTaking people
- Kinderspital Zentralschweiz, LuzernLucerne, SwitzerlandContact: Freimut H. Schilling, MDTaking people
- Ostschweizer KinderspitalSankt Gallen, SwitzerlandContact: Cornelia Vetter, MDTaking people
- Universitäts-Kinderspital ZürichZurich, SwitzerlandContact: Sabine Kroiss Benninger, MDTaking people
About the trial
What the trial wants to find out
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.
Read full original descriptionShow less
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.
The group in the trial
- Peripheral neuroblastic tumors (ganglioneuroma, ganglioneuroblastoma and neuroblastoma)Other group
Treatment: No Intervention NA
Questions to ask the study team
- How often do I need to come in, and for how long each time?
- Are travel costs paid?
- Can I keep my own doctor?
- What happens if I want to stop?
Contact the study team: see the registry record → Contacts and Locations
Print a page for my doctorData and sources
- Registry record
- Listed on ClinicalTrials.gov.
- Official title
- SIOPEN BIOPORTAL, An International Registry Linked to a Virtual Biobank for Patients With Peripheral Neuroblastic Tumours
- Plain-language title
- Registry of children with peripheral neuroblastic tumours and linked biobankGenerated from the registry record. The registry title is the official one.
- AI summary
- From the trial's eligibility criteria. Read by machine on 12 November 2026.
- Record updated
- 22 July 2025