What do we do?
Learning and improving care
In the NCCR, we collect information about the diagnosis, treatment, and outcomes of the care. We share reports with healthcare providers so they can see how good their care is and where they can improve. We also compare our care with other (international) hospitals that treat children with cancer. By learning from the care we give, we can make it even better.
Making decisions together
We can also use the NCCR data during doctor visits to help you and your child make decisions about treatment and follow-up care. What does a treatment mean for your child now and in the future? What will the quality of life be like? What are the chances of complications? Will the symptoms and pain get better? What is the risk of the disease coming back? We can use the NCCR to help answer these questions.
Research
We can also use NCCR data for scientific research. We only do this if you and/or your child agree, and the research committee of the Princess Máxima Center approves the study.
Managing the data
The NCCR is managed by the Trial and Data Center of the Princess Máxima Center. This team processes the data for the NCCR and provides feedback reports.
What data do we collect?
In the NCCR, we collect information about the type of cancer, the treatment, and any problems during the treatment. We also collect data that affects long-term quality of life, like heart problems, reduced fertility, or the risk of a second type of cancer. You can find the list of data we collect here.
Who can see the data?
Only NCCR staff can see the data in the NCCR. No personal details like names and addresses are included.
Researchers can request data from the NCCR, but only if you and/or your child give permission, and if the Princess Máxima Center’s research committee approves the study. You can read more about this on this page.
Questions about personal data processing?
You can find more information about it here.