Who can enter
All children with solid and brain tumors with active disease, who are being treated at the Princess Máxima Center and cannot be cured.
Goal
We would like to ask children who cannot be cured, and who die as a result of childhood cancer, to donate their tumor and other tissue for scientific research at the Princess Máxima Center after their death. This will allow the researchers at the Máxima to investigate specifically those tumors that have continued to grow despite all treatment. The goal of this research is to learn more about these tumors, and thus develop better future treatments for children with cancer. We also want to learn more about the influence of chemotherapy and other cancer therapies on heathy tissues and about changes that occur to the body at the last stages of the disease.
Finally, we want to investigate how much of a burden this study is on families. We will ask parents if they are willing to talk to us about their experiences as part of this study, both shortly after the tumor donation and some time afterwards. This will only be done if parents give permission. We hope to learn from this so that communication about and the procedure surrounding donation will continue to be as good as possible in the future.
Background
In the Netherlands, every year some 600 children are diagnosed with a form of cancer. Unfortunately, not all of these children can be cured and each year an average of 150 children die from this disease. All over the world, much scientific research is being done to find out why some children can get better and others cannot.
In the Netherlands, this research takes place at the Princess Máxima Center. We study cancer cells in the laboratory to find out how they differ from normal cells. We also try to mimic cancer in the laboratory so we can test new treatments. For these studies, we usually use cancer cells from children who have had surgery or who have had a biopsy, where (a part of) the original tumor was removed. This provides a lot of information. However, many questions remain unanswered.
If a tumor is not shrinking as a result of the treatment, but rather growing or metastasizing, often something has changed in the tumor cells so that the treatment does not work (anymore). In this case, the tumor eventually reacts so poorly to the treatment that organs no longer function properly and children cannot be helped anymore, and succumb to the disease.
We do not really know what the cancer cells look like and how they behave in this final stage of the disease. This is because we can rarely examine tumor cells from children who have died from their cancer. This project aims to allow us to examine precisely those tumors.