Improving research into childhood cancer
Marion Persoon, coordinator of the Biobank: 'The existence of the Biobank allows us to accelerate research into childhood cancer and thereby also to continue to work on our mission: to cure every child with cancer, with optimal quality of life. All children and parents who come to the Máxima Center are asked if patient material may be stored in the Biobank. This involves different types of materials and data, so that extensive research can be done with them in the future. For example, blood cells and cancer tissue are stored in the Biobank. This makes it possible to create a unique collection of common, but also rare types of cancer. By using the latest techniques, we investigate how certain tumors develop and how we can best treat them.
Children's and parents' consent
Early on in the treatment process, doctors ask children and parents for permission to store material and data in the Biobank. It is a conscious decision to ask for this permission immediately upon entering the Máxima Center', says Marion Persoon. 'A child's material before the start of treatment is very valuable for research purposes. Researchers compare this material, for example, in a larger study context, sometimes in international collaborations, and look at a later stage of the treatment process to see if any changes have developed in the cancer cells.' To confirm a diagnosis, blood is often drawn, a biopsy taken, or a bone marrow puncture performed. The material that is not used to make a diagnosis, or to check whether the treatment is succeeding, can be stored in the Biobank. Parents, and children over 16 years of age, may always decide to withdraw consent. Of all parents and children who respond, 96% give consent.
Researchers at work
There are several conditions before a study can be conducted. Researchers are not given access to patient material 'just like that': the biobank handles this very strictly, according to strict rules. Researchers submit a well-founded research plan which is assessed by the Biobank and Data Access Committee (BDAC). The committee consists of specialists from different backgrounds, allowing for optimal assessment. Before the proposal is approved, the committee looks at whether the research has been set up properly and whether it fits in with the mission of the Princess Máxima Center. The committee has approved approximately 320 applications since the start in 2018. Marion Persoon: 'Research into childhood cancer is very important. The more good research we do, the more leads we can find to improve treatments for children and their quality of life. The Biobank remains fully committed to this.'