Every year, some 600 children (0 to 18 years) in the Netherlands are diagnosed with cancer. There is a big difference between cancer in children and cancer in adults. A large proportion of childhood cancers occur mainly, or only, in children. The treatments and chances of a cure are also different than in adults.
Since 1989, all cancer diagnoses are recorded in the Netherlands Cancer Registry, which protects the privacy of patients. Cancer in children has also been recorded in the cancer registry from the start.
Since 2018, diagnostics and highly complex care for all children with cancer in the Netherlands has been centralized in the Princess Máxima Center. The Máxima is a research hospital, where scientists and healthcare professionals work closely together on new treatments and new perspectives on a cure.
With the collaboration, the Princess Máxima Center and IKNL are expanding the existing basic registry of childhood cancer, with more information for each tumor type than the diagnosis alone. In this way, data on treatment and outcome can also be well-maintained and analyzed. With the data from the cancer registry, the two organizations can evaluate developments in occurrence and survival – also in relation to the centralization of all care and research for children with cancer in the Princess Máxima Center.
Large amount of data
There are more than 40 different main groups of childhood cancer, and more than 100 forms in total. Experts from both organizations are currently mapping out which information they will collect for each tumor type. Registration is carried out by data managers of the Princess Máxima Center. As a result, additional information can be requested from the doctors where necessary. The data is managed by IKNL. In addition, a researcher from the Princess Máxima Center will join the IKNL scientific committee.
Prof. dr. Thijs Merkx, director IKNL: ‘The data on diagnosis, treatment and survival provide insights to continuously improve care. So that the survival of childhood cancer increases as quickly as possible and the long-term consequences of childhood cancer can be limited as much as possible.’
Dr. Henrike Karim-Kos, group leader at the Princess Máxima Center and senior researcher at IKNL, says: ‘The central registration of childhood cancer is a very important development from which we can learn a lot. We hope to see continuous evidence that the developments in concentrated care and research – from the opening of the Máxima to new treatments – actually lead to improved survival for children with cancer.
‘The collaboration between the Princess Máxima Center and IKNL will be particularly valuable for the integration of data from children and adults with cancer. This will give us more insight into the differences in outcome for the group of adolescents and young adults, some of whom are treated in pediatric oncology and some in adult oncology.’
Dr. Harm van Tinteren, co-head of the Trial and Data Center at the Princess Máxima Center, says: ‘Thanks to the collaboration between the Princess Máxima Center and IKNL, we are able to achieve very systematic reporting of clinical data from children with cancer. To measure is to know – we are now getting an even better insight into the progress in childhood cancer. This allows us to always test ourselves against our mission to cure all children with cancer, with optimal quality of life.’