SIOPEN BIOPORTAL (neuroblastoma)
International registration of data to accelerate research on neuroblastoma.
Recruiting
Who can enter
Children with neuroblastoma
Goal
The aim of the SIOPEN BIOPORTAL is to collect data from all children with neuroblastoma in Europe in an international database. We also record which biological samples are available for research. This will help accelerate international research into neuroblastoma in the future. Our hope is that this will lead to better treatments, more quickly.
Background
Neuroblastoma is a rare disease, which is why international collaboration is essential to conduct high-quality research. SIOPEN is an international network of doctors and researchers who work together to study neuroblastoma (www.siopen.org).
For some patients, a lot of data is collected because they take part in a clinical study. However, for patients who are not enrolled in a study, data is often not collected at all. That is why SIOPEN would like to record a limited set of information from all patients in the countries that are part of SIOPEN, so this data can be used for future research into neuroblastoma.
In many cases, biological samples from patients are stored in the hospital, and these may be useful for research. These samples may have been stored in a hospital’s general biobank or collected during participation in a clinical trial. International researchers are often unaware of what samples are available for research across SIOPEN countries.
That is why we also want to register which biological samples are stored in each hospital. This way, SIOPEN researchers know what samples exist and may request access to them for future research into neuroblastoma. This will help speed up research and hopefully lead to better treatments sooner.
In order to participate in a study please refer to your/your child’s doctor.
Last reviewed
May 4, 2026
Study details
- Study details
Official title
SIOPEN BIOPORTAL - An international registry linked to a virtual biobank for patients with peripheral neuroblastic tumours
Cancer type
Neuroblastoma
Number of participants
Approximately 150 patients are expected to participate in the Netherlands
Start date
May 4, 2026
Status
Open
Local principal investigator
Prof. dr. G.A.M. Tytgat
Sponsor
SIOPEN
Approval
This study has been reviewed and approved by the internal scientific committee (Clinical Research Committee) of the Princess Máxima Center. An accredited medical research ethics committee waived the need for official approval according to the Medical Research Involving Human Subjects Act (WMO), and is therefore not further involved in the review of the research. This is only done for studies with low risk or low patient burden. More information can be found at: CCMO.
The above information is intended as a brief summary only and may not reflect the most up-to-date information. For full details and the current status of a protocol, physicians can contact the Princess Máxima Center directly.