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A Big Step Forward for Neuroblastoma Data

Better data. Better research. Better treatments. Better outcomes, from every diagnosis.

Data underpins all our neuroblastoma research, and with new funding from Solving Kids Cancer UK and Neuroblastoma UK, we are unlocking access to a lot more of it.

Every neuroblastoma diagnosis generates valuable information. But so far, it hasn’t been gathered all together in one place. What if we could bring more of that information together, connect the dots and use it to help answer some of the biggest questions in neuroblastoma research? Now, we can take a major step towards doing exactly that.

Solving Kids’ Cancer UK and Neuroblastoma UK are proud to have jointly awarded £50,827 over five years to fund UK participation in SIOPEN Bioportal – a pioneering international resource designed to bring together all the important information surrounding neuroblastoma diagnoses which, together with the existing UK infrastructure collecting biological samples, has the potential to significantly advance neuroblastoma research. 

Prof. Deb Tweddle, Bioportal Principal Investigator, said:

“This is something we’ve been crying out for for a long time. The ability to link the biology of the tumour with a prospectively collected picture of that patient’s journey and their neuroblastic tumour is really unique in the UK.”

Bringing the pieces together

Neuroblastoma research already generates huge amounts of valuable information. Clinical trials collect detailed data to answer specific questions about treatments, research studies investigate the biology of the disease, and biobanks collect precious samples. But there is also a much wider picture of every child’s experience - from their diagnosis and treatment to surgery, pathology, other medical information and longer-term follow-up. The UK has never had a national neuroblastoma registry to bring together this breadth of data. 

Bioportal will create the opportunity to build this national picture, as well as connect it with the wider international neuroblastoma research community. By using harmonised data and terminology, researchers will be better able to compare information across countries and build a stronger international picture of neuroblastoma. 

Bioportal changes the scale of what we can learn. 

With full consent, every child diagnosed with neuroblastoma - or in fact any peripheral neuroblastic tumour - will be registered on Bioportal from diagnosis, whether or not they take part in a clinical trial. This means that we can build a broader picture of neuroblastoma across the entire population. This could help reveal patterns and relationships that may not be visible when information is looked at within individual trials or studies alone - helping us understand neuroblastoma, and the children it affects, in greater depth.

“Clinical trials are wonderful, but real-world data is everything…Patients can come off a clinical trial and their data is no longer captured. Bioportal gives us a chance to continue capturing that data.”

A wider view of every child's neuroblastoma journey

The Bioportal's specialist areas include tumour biology, liquid biopsy, including circulating RNA and cell-free DNA, urine catecholamines, bone marrow, pathology, surgery and long-term follow-up, as well as epidemiology, helping researchers understand patterns in who develops neuroblastoma and how the disease affects different groups of children. 

It can also connect information from clinical trials and other databases, helping researchers see how different pieces of information relate to one another. 

Instead of looking at one piece of the puzzle at a time, researchers can see more of the picture.

Why is that so important? 

Neuroblastoma can behave very differently from one child to another. Some children respond well to treatment, while others may need different approaches. Researchers need to understand these differences if we are to develop better ways of diagnosing and treating the disease.

By connecting more information, the Bioportal could help researchers:

  • Understand more about how neuroblastoma differs between children
  • Explore why some children respond differently to treatment
  • Identify patterns and potential new areas for research
  • Investigate the relationship between the biology of the disease and clinical outcomes
  • Support research into what causes neuroblastoma and how it can be better treated
  • Study what happens to children over the longer term

“Bioportal gives us the potential to ask questions that we can't answer at the moment. For example, why doesn't every child who receives cisplatin develop hearing impairment? By linking biological samples with clinical information, we could start to investigate whether genetic factors help explain those differences.”

What about privacy?

Bringing information together must always go hand in hand with protecting children's privacy.

The Bioportal uses pseudonymisation and privacy-preserving record linkage. This means information can be linked across different sources without researchers needing access to identifying details such as a child's name. The system uses a unique virtual patient identifier to support this process. And consent is always collected before any data is collected - while it’s incredibly valuable, participation in the Bioportal isn’t mandatory. 

A new chapter for neuroblastoma research

For families affected by neuroblastoma, research can sometimes feel like a collection of separate studies, tests, samples and clinical trials. The Bioportal will connect those pieces.

Every piece of information can help tell us something about neuroblastoma. Together, they could help us ask bigger questions, uncover new research opportunities and understand the disease in ways that individual studies alone cannot.

Ultimately, this is about giving researchers the best possible foundation to learn more about neuroblastoma and work towards better treatments and better outcomes for children.

“Capturing everything means we won't miss something the significance of which we might only understand in the future. This is exactly the kind of innovation we are proud to support as charities working for the neuroblastoma community. Ultimately, we hope Bioportal will give researchers the information they need to understand the disease better and give more children the chance to live long, healthy lives.” 

Prof. Deb Tweddle, Bioportal Principal Investigator