To make the exact diagnosis, a small piece of tissue or blood is taken from children when they first come the Máxima Center. The material that remains is - if child and parents give permission for this - stored in the Biobank. Among other things, tissue and blood of patients are stored so it can be used for future scientific research.
Using of tissue from the Biobank, scientists in the Máxima Center can do research to understand how different types of childhood cancer arise, and how we can best treat them. Medical data, including questionnaires about the quality of life, are also stored in the Biobank. For example, researchers can link the biology of the tumor to how well a certain treatment works, or see which children are at higher risk of fatigue. The research with tissue and data from the Biobank can lay the foundation for improving treatment plans and the development of new medicines.
In June of this year, the Máxima Center marked its fifth anniversary. The Biobank contains tissue and data from most children who were treated within that time. In order to gain insight into the treatment of childhood cancer before the Máxima Center opened, almost 1800 people who have had childhood cancer have been approached. Doctors and the nursing specialist on the LATER outpatient clinic asked them if they wanted to give permission to use their data for research. Thanks to this project, the number of permissions - and therefore the number of patients whose data is stored in the Biobank - has doubled in a year and a half. On November 10, we received permission from the 5000th (former) patient.
Dr. Wouter Kollen, Clinical Director Quality of Life, the department that also covers care and research into late effects, says: ‘Life after childhood cancer will never be the same as life before childhood cancer. Registration of long-term healthcare outcomes makes an important contribution to optimizing new treatments and improving quality of life. It also helps us to offer better support during and after treatment for childhood cancer. Data helps us to fill the gaps in our knowledge: that is why the expansion of the Biobank with data from survivors is so important. Together with our patients and their data, we can monitor the progress in survival and the quality of life for children with cancer and for childhood cancer survivors.’