SIOPEN BIOPORTAL, An International Registry Linked to a Virtual Biobank for Patients With Peripheral Neuroblastic Tumours
Recruiting now · Not applicable
Conditions studied: Neuroblastoma, Ganglioneuroblastoma, Ganglioneuroma
In brief
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. 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.
Key facts
- Study ID
- NCT05192980
- Run by
- Institut Curie
- People needed
- 600
- Starts
- 2023-11-02
- Expected to finish
- 2038-11-02
- Last updated by the study team
- 2025-07-22
Who can join
Age: any. Sex: any. Healthy volunteers: not accepted.
You may qualify if…
- 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 is running
- Chu Reims — Reims, France (enrolling)
- Hôpital des Enfants — Toulouse, France (enrolling)
- Institut Curie — Paris, France (enrolling)
- Hôpital Armand Trousseau — Paris, France (enrolling)
- Hôpital Hautepierre-CHU Strasbourg — Strasbourg, France (enrolling)
- CHU NANCY- Hôpital d'Enfants — Vandœuvre-lès-Nancy, France (enrolling)
- Institut Gustave Roussy — Villejuif, France (enrolling)
- Oslo Universitetssykehus — Oslo, Norway (enrolling)
- Kantonsspital Aarau AG — Aarau, Switzerland (enrolling)
- Universitäts-Kinderspital beider Basel UKBB — Basel, Switzerland (enrolling)
- Ospedale San Giovanni — Bellinzona, Switzerland (enrolling)
- Inselspital Bern — Bern, Switzerland (enrolling)
- HUG Hôpitaux Universitaires Genève — Geneva, Switzerland (enrolling)
- CHUV, Centre hospitalier universitaire vaudois — Lausanne, Switzerland (enrolling)
- Kinderspital Zentralschweiz, Luzern — Lucerne, Switzerland (enrolling)
- Ostschweizer Kinderspital — Sankt Gallen, Switzerland (enrolling)
- Universitäts-Kinderspital Zürich — Zurich, Switzerland (enrolling)
- Chu Hopital Sud — Rennes, France (enrolling)
- Hôpital Charles NICOLLE — Rouen, France (enrolling)
- Fakultni nemocnice v Motole — Prague, Czechia (enrolling)
- CHU Amiens — Amiens, France (enrolling)
- Chu Angers — Angers, France (enrolling)
- Hôpital Jean Minjoz — Besançon, France (enrolling)
- Hôpital des enfants — Bordeaux, France (enrolling)
- Chru Brest — Brest, France (enrolling)
Full record on ClinicalTrials.gov
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