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DNA data available in the cloud to speed up research

The Princess Máxima Center will make DNA and clinical data from children with cancer widely available via the cloud to researchers working on childhood cancer, in the Netherlands and abroad. This will enable even more, faster and better scientific research. The knowledge hidden in all that data can lead to new insights to improve the treatment of childhood cancer in the future. In April, the data of the first 100 children with cancer will be placed in the cloud.

As part of scientific research, researchers from different institutes often work together. They bring together knowledge and skills to carry out faster and better research.

Learning as much as possible together

‘Collaboration is extremely important in childhood cancer. There are many different types of childhood cancer, all of which are rare,’ says Dr. Patrick Kemmeren, research group leader at the Máxima Center specialized in bioinformatics and big data. He leads a large NWO-funded project in which he makes clinical and research data from children with cancer available in the cloud to fellow researchers from all over the world.

‘The Princess Máxima Center is the largest pediatric cancer center in Europe. This gives us a unique opportunity to collect large amounts of data on childhood cancer. We already do a lot of research on this ourselves. But we think other researchers can help us extract all the knowledge that lies hidden in the data. By making the data more widely available, we can learn as much as possible about childhood cancer within the entire research community, and together contribute to new, better treatments.’

Dutch Comprehensive Childhood Cancer Commons

In the NWO project, Kemmeren and colleagues are gathering data for a collection of around 4,000 genomes, analyses of the entire tumor DNA, from children with cancer who have been treated at the Máxima Center. Scientists around the world can use this Dutch Comprehensive Childhood Cancer Commons, or NL-4C, for research.

‘There are two types of data in NL-4C,’ says Kemmeren. ‘On the one hand, we’re gathering clinical data: what is the precise form of cancer, what is the age or gender of a child, but also: what treatments has the child had? We also collect data about the biology of the tumor. For example, which DNA changes or blood results have been assessed in the child. All this information together – and the relatively large numbers per form of childhood cancer – are extremely valuable for all kinds of research questions. For example, researchers can look for new leads in the DNA for the development of targeted treatments. Or develop ways to predict whether children are suitable for immunotherapy. And we are certainly open to ideas for research that we have not yet worked on ourselves.’

Consent and security

Tissue is taken from all children who come to the Princess Máxima Center with a suspicion of cancer to make a precise diagnosis. The child and parent are always asked whether any tissue that remains may also be used for research. Only data from children for whom the Máxima Center has received permission will become available within NL-4C. And then only to researchers who have been given specific access and training for this.

The security of the data has the highest priority, says Kemmeren. ‘We first worked hard to set up a system in which we can guarantee the security of the data. That is one of the reasons we chose 'the cloud': it means that we can store the data in the Netherlands and do not have to send it separately to researchers abroad or even outside of Europe.’

Highly anticipated

Since the start of the NL-4C project, Kemmeren's team has worked on testing the cloud system and preparing it for use, in addition to data security. In April, the data from the first 100 children with cancer will be placed in the cloud to make an initial analysis of the complete tumor DNA. The team will make another 900 genomes available later in the year. The Kemmeren group will continue to monitor the system closely for optimal and safe use, in collaboration with Google Cloud, who manage the system.

Kemmeren: ‘Important partners abroad, such as Hopp Children's Cancer Center Heidelberg (KiTZ) and St. Jude Children's Research Hospital, are already looking forward to this dataset with great interest. After all, we provide a unique insight into the different forms of childhood cancer for an entire country. This autumn we aim to present NL-4C to the international research community, and we expect the first research results in early 2025.’

We can imagine that you have questions about sharing data about children with cancer in the Google cloud. You can find more information in this FAQ.

The ambitions of the Princess Máxima Center in healthcare and research cannot be realized without digitization and high-quality use of (clinical) data. That’s why data provision is an important area of focus. Read more in the multi-year strategy 2024-2028.