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

NCT ID: NCT05192980

Last Updated: 2025-07-22

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

RECRUITING

Clinical Phase

NA

Total Enrollment

600 participants

Study Classification

INTERVENTIONAL

Study Start Date

2023-11-02

Study Completion Date

2038-11-02

Brief Summary

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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.

Detailed Description

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Conditions

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Neuroblastoma Ganglioneuroblastoma Ganglioneuroma

Study Design

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Allocation Method

NA

Intervention Model

SINGLE_GROUP

Primary Study Purpose

OTHER

Blinding Strategy

NONE

Study Groups

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Peripheral neuroblastic tumors (ganglioneuroma, ganglioneuroblastoma and neuroblastoma)

Group Type OTHER

No Intervention NA

Intervention Type OTHER

Additional blood sampling (not mandatory)

Interventions

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No Intervention NA

Additional blood sampling (not mandatory)

Intervention Type OTHER

Other Intervention Names

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Bio-sampling

Eligibility Criteria

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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


R-1. (Adult) Patients with olfactory neuroblastoma R-2. Central nervous system (CNS) neuroblastoma (as per the WHO classification)
Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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Institut Curie

OTHER

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Locations

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Fakultni nemocnice v Motole

Prague, , Czechia

Site Status RECRUITING

CHU Amiens

Amiens, , France

Site Status RECRUITING

Chu Angers

Angers, , France

Site Status RECRUITING

Hôpital Jean Minjoz

Besançon, , France

Site Status RECRUITING

Hôpital des enfants

Bordeaux, , France

Site Status RECRUITING

Chru Brest

Brest, , France

Site Status RECRUITING

CHU CAEN - Fédération de cancérologie - niveau 21

Caen, , France

Site Status RECRUITING

CHU D'Estaing de CLERMONT FERRAND

Clermont-Ferrand, , France

Site Status RECRUITING

DIJON Hôpital d'enfants

Dijon, , France

Site Status RECRUITING

Chu Grenoble

Grenoble, , France

Site Status RECRUITING

Centre Oscar Lambret

Lille, , France

Site Status RECRUITING

Centre Léon Bérard

Lyon, , France

Site Status RECRUITING

Hôpital d'Enfants de la Timone

Marseille, , France

Site Status RECRUITING

Hôpital Arnaud de Villeneuve

Montpellier, , France

Site Status RECRUITING

Chr Nantes

Nantes, , France

Site Status RECRUITING

CHU NICE

Nice, , France

Site Status RECRUITING

Institut Curie

Paris, , France

Site Status RECRUITING

Hôpital Armand Trousseau

Paris, , France

Site Status RECRUITING

Hôpital Jean Bernard

Poitiers, , France

Site Status NOT_YET_RECRUITING

Chu Reims

Reims, , France

Site Status RECRUITING

Chu Hopital Sud

Rennes, , France

Site Status RECRUITING

Hôpital Charles NICOLLE

Rouen, , France

Site Status RECRUITING

Hôpital Nord

Saint-Etienne, , France

Site Status NOT_YET_RECRUITING

Hôpital Hautepierre-CHU Strasbourg

Strasbourg, , France

Site Status RECRUITING

Hôpital des Enfants

Toulouse, , France

Site Status RECRUITING

Hôpital Clocheville

Tours, , France

Site Status NOT_YET_RECRUITING

CHU NANCY- Hôpital d'Enfants

Vandœuvre-lès-Nancy, , France

Site Status RECRUITING

Institut Gustave Roussy

Villejuif, , France

Site Status RECRUITING

Oslo Universitetssykehus

Oslo, , Norway

Site Status RECRUITING

Kantonsspital Aarau AG

Aarau, , Switzerland

Site Status RECRUITING

Universitäts-Kinderspital beider Basel UKBB

Basel, , Switzerland

Site Status RECRUITING

Ospedale San Giovanni

Bellinzona, , Switzerland

Site Status RECRUITING

Inselspital Bern

Bern, , Switzerland

Site Status RECRUITING

HUG Hôpitaux Universitaires Genève

Geneva, , Switzerland

Site Status RECRUITING

CHUV, Centre hospitalier universitaire vaudois

Lausanne, , Switzerland

Site Status RECRUITING

Kinderspital Zentralschweiz, Luzern

Lucerne, , Switzerland

Site Status RECRUITING

Ostschweizer Kinderspital

Sankt Gallen, , Switzerland

Site Status RECRUITING

Universitäts-Kinderspital Zürich

Zurich, , Switzerland

Site Status RECRUITING

Countries

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Czechia France Norway Switzerland

Central Contacts

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Gudrun Schleiermacher, MD,PhD

Role: CONTACT

0144324554

Kamel BOURZAH, MD

Role: CONTACT

Facility Contacts

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Vícha Aleš, MD

Role: primary

Gudrun SCHLEIERMACHER, MD

Role: primary

0144324551

Kirsten Brunsvig Jarvis, MD

Role: primary

Andreas Klein-Franke, MD

Role: primary

Nicolas von der Weid, MD

Role: primary

Mattia Rizzi, MD

Role: primary

Miriam Diepold, MD

Role: primary

Fabienne Gumy-Pause, MD

Role: primary

Raffaele Renella, MD

Role: primary

Freimut H. Schilling, MD

Role: primary

Cornelia Vetter, MD

Role: primary

Sabine Kroiss Benninger, MD

Role: primary

Related Links

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Other Identifiers

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IC 2020-17

Identifier Type: -

Identifier Source: org_study_id

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