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

Launched by INSTITUT CURIE · Dec 31, 2021

Keywords

ClinConnect Summary

The SIOPEN BIOPORTAL is an international study designed to create a registry and virtual bank of samples for patients with certain types of tumors called peripheral neuroblastic tumors, which include neuroblastoma, ganglioneuroblastoma, and ganglioneuroma. The goal of this study is to gather important information about patients' medical history, biological samples, and genetic details. This data will help improve research and treatments for these conditions by allowing scientists to share information across countries and develop better personalized medicine approaches for future patients.

To be eligible for this study, patients need to have one of the specified tumors either at the time of their initial diagnosis or upon relapse if they haven't already registered. Parents or legal guardians, as well as the patients themselves if they are old enough, will need to give their written consent to participate. Participants can expect to contribute their health information and biological samples, which will be used to enhance research and potentially lead to better treatment options in the future. This study is currently recruiting participants of all ages and genders.

Gender

ALL

Eligibility 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)