SIOPEN BIOPORTAL

Solving Kids' Cancer UK provided an exceptional grant in January 2024 to support UK participation in the SIOPEN BIOPORTAL, helping bring the first neuroblastoma registry of its kind to the UK. 

Together with funding from Neuroblastoma UK, we are funding a Project Manager to help establish and coordinate UK involvement in this important international initiative. 

This will enable clinical and biological information from children and young people diagnosed with neuroblastoma and other neuroblastic tumours in the UK to be included in a major international research resource, helping researchers better understand the disease and develop more effective treatments. 

Why is this research needed? 

Neuroblastoma is a complex disease, and every child's cancer can behave differently and respond differently to treatment. This makes it difficult to predict outcomes and identify the most effective therapies. To improve treatment, researchers need access to larger datasets that can help them better understand the disease and the differences between patients.  

What is the SIOPEN BIOPORTAL? 

The SIOPEN BIOPORTAL is a large international registry linked to a virtual biobank. It brings together clinical and biological information from children and young people diagnosed with neuroblastoma and other neuroblastic tumours across the SIOPEN network, a European neuroblastoma research network. 

Once opened in the UK, children and young people diagnosed with these tumours will be offered the opportunity to have information about their diagnosis, surgery, treatment and follow-up included in BIOPORTAL. Importantly, BIOPORTAL is designed to include patients across all neuroblastoma risk groups, whether or not they are taking part in a clinical trial. 

Information is collected throughout a child's cancer journey and stored securely in an anonymised, GDPR-compliant database. 

How will it help researchers? 

In collaboration with the VIVO biobank, the UK's biggest resource for storing and studying samples of cancers in children and young people, BIOPORTAL allows researchers to link clinical data with biological samples. This will help them investigate how different tumour characteristics affect outcomes for children with neuroblastoma, including how long the disease remains stable and long-term survival.  

By bringing this information together, researchers will be able to build a much clearer picture of how these tumours develop, how they respond to treatment and what influences outcomes over time. 

What impact could it have? 

By bringing together detailed clinical and biological data in a consistent format, BIOPORTAL will make it easier for researchers across countries to share information and work together. It will support the development of more effective clinical trials, help researchers develop more targeted treatments, and identify which children have the greatest unmet need so future research can be focused where it will have the biggest impact. 

Ultimately, BIOPORTAL represents an important step towards improving outcomes for children with neuroblastoma. By bringing together information from patients across Europe, it has the potential to help researchers answer some of the biggest unanswered questions about the disease and shape future treatment approaches. 

The knowledge gained through BIOPORTAL could help shape future treatments and bring us closer to a future where many more children survive neuroblastoma.