Scientific research

Why is scientific research important?

Thanks to scientific research in the past, more and more children can now be cured and have a better quality of life during and after treatment. Research gives us more knowledge about the different types of childhood cancer, how well treatments work, and how the disease and its treatment affect the lives of children and their families. It helps us move closer to our goal: curing all children with cancer while ensuring the best possible quality of life.

Different types of research

You will almost always be treated according to a protocol created by experts from the Netherlands and other countries. Such a protocol usually also includes a research component.

In addition, we conduct other scientific research at the Máxima Center, for example on:

• which medicines or combinations of medicines work best

• the quality of life of children and families during and after treatment

• how we can continue to improve our care

Taking part in scientific research

Taking part in scientific research is always voluntary. This means that you and your parents can decide for yourselves whether you want to participate.

You will always receive an explanation about the study first, and you will also receive the information in writing. You can ask questions and you will have enough time to decide whether you want to participate.

If you decide to participate, you will sign a consent form. From the age of 12, you sign together with your parent, and from the age of 16, you sign the form yourself.

You can stop participating in the study at any time. You do not have to explain why you want to stop, and stopping will not affect your treatment.

Your data and privacy

According to the General Data Protection Regulation (GDPR), the information collected about you during the study must remain confidential. That is why the data are stored using a code. Only a small number of people can view your data. Who they are is listed in the consent form. They use the data only for the study and publish the results without mentioning the names of the participants.

Biobank

In the biobank of the Máxima Center, we store medical data and body materials, such as blood, urine, and tumor tissue. We only do this if you and/or your parents give written permission. The material in the biobank helps us conduct research to further improve the treatment of childhood cancer.

Research results

When a study is completed, the results are published in a scientific journal. The Máxima Center and the Dutch Childhood Cancer Association regularly share summaries of these research results on their websites, in newsletters, and on social media.