Consent

The Netherlands Cancer Institute (AVL) collects data and biological materials from you for your diagnosis and treatment. These are also important for scientific research. We ask your permission for the use of these.

While you are a patient with us, we collect and store various personal and medical data and biological materials from you for your treatment, such as scans, blood, urine or tissue. We would really like to use some of the data, images and biological materials for scientific research into cancer and related disorders and to improve care. This is called 'further use'. No additional data or biological materials need to be collected for this. We can use previously collected materials if you give us your permission in advance.

In this folder, you can read more about this consent and about scientific research and why this is so important.

We ask you to read this folder carefully and then decide whether you give us your permission or not. You can let our employee know your decision when you register. They will record this in your patient file.

If you do not give us your consent, we may still ask you to cooperate with other specific studies. This may, for example, involve completing a questionnaire or participating in clinical studies (trials). In that case, your permission is always requested separately.

Why is it important to give permission?

If you give us your permission, you help us to achieve our goal: to create a world without cancer. Scientific research teaches us more about how we can prevent, treat and cure cancer and related disorders and how we can improve our care. Scientific research also gives us more insight into how we can improve the quality of life. This is important for all current and future patients.

What kind of research do we do?

We do different types of scientific research on cancer, including genetic research. We often do this together with other researchers, in the Netherlands and abroad. We want to understand and treat cancer and related disorders better. We also want to continue to improve the quality of life for patients. That is why we also conduct scientific research into the treatment and care of patients. We publish important results from scientific research in scientific journals. You are not recognizable in these results.

What has been researched in recent years with the help of stored data and biological materials, and what does this mean for future patients?

• We have investigated whether we can find new characteristics in tumors that can predict the outcome of the treatment. This way, doctors can make a better choice for the best treatment together with the patient.
• We have done scientific research into new and better ways of radiation that damage less healthy tissue. Because of the better radiation, we are able to treat the tumor better and do less damage to healthy tissue.
• We have investigated the consequences that cancer treatment can have on the quality of life of patients. With this knowledge, we can better guide cancer patients and their loved ones during and after the disease.
• We are also investigating how we can continue to improve patient care. Small improvements often have a big effect on the care we provide for patients.
• We have investigated what makes certain treatments work for some patients and not or less well for others. What genetic changes cause these differences? We use this knowledge to develop new treatments.
• We have investigated why treatment does not work or works less well after a while on some patients. How can we prevent this?

For which data and materials do we ask your permission?

We can use the following for scientific research:

• Information about yourself: for example, your height, weight, gender, age.
• Information about your disease(s): including which medicines you take, what treatment you receive and the results.
• Images of your body: for example, X-rays, echoes and scans.
• Voice recordings: for example, recordings of patients' voices during a visit to a speech therapist.
• Biological materials: for example, blood or urine and data that we can extract from it, such as genetic data, or tissue that we removed during  surgery. We used that material to determine your diagnosis.

This consent does not apply to scientific studies (trials). For participation in such a study, your permission is always requested separately.

Why are my biological materials kept?

Blood, tissue or urine is used to determine your diagnosis. We keep the remaining material. Suppose you return to us with new symptoms, then we can use that material to research your symptoms. Scientific research with your biological material will only take place if there is enough left over. Some tissue is always retained for any necessary diagnosis and treatments in the future.

What do we want to do with your data and materials?

• We use it to conduct scientific research into cancer and related diseases: how can we prevent, treat and cure these diseases, and how can we improve patient care?
• We do a lot of work with scientific researchers from other institutions and with researchers from companies. Sometimes these researchers are abroad. This collaboration ensures even better research results. When we work with other researchers, we want to share your data with them.
• We want to share your data with organizations that register medical and other data such as:

- the causes of death registration of the Central Bureau for Statistics

- the Dutch Cancer Registry (NKR)

On www.avl.nl, you will see an overview of all authorities with whom we (have to) share data.

• In rare cases, a researcher may find something that may be of interest to your health or the health of your family members. In that case, the doctor or general practitioner will inform you about this.

We handle your data very carefully. You can read how we do that below.

• We comply with the rules and laws relating to the processing of data and data security (such as the General Data Protection Regulation), and with the agreements for scientific research between doctors, researchers and patient associations. These agreements are laid out in the 'Codes for Good Use and Good Behavior' ('Codes Goed Gebruik en Goed Gedrag', Federa-COREON).
• We store your data electronically in your patient file. We do this in a secure way. Only authorized personnel have access to your file.
• If we need data from your patient file for scientific research, then we work with coded data as much as possible so that you are not recognizable to the researcher. A review committee assesses the research with patient data and/or biological material in advance.
• If we work with researchers outside the EU, then we only share your data if they deal with your data as securely as researchers within the EU.
• Before we share your data and materials with other researchers, we make written agreements with them about this. Every time.
• If a researcher writes an article about the results of a scientific study and that researcher used data or material of yours, then readers of the article will not know that these details are yours.

In our Privacy Statement, you can read more about how we handle your data and materials and your rights.

Do we profit from the research?

We do not make a profit from scientific research. We do not sell your data or materials to companies that want to make a profit. If we do get money for research, then we use that for the care of patients or for new scientific research.

How long does your permission apply?

Your permission applies for as long as you choose. As long as you do nothing, it remains valid. Your permission also applies to data and materials that we collect from you in the future.

Do you not want to give permission, or do you want to withdraw your consent?

This will not affect your treatment or your contact with us. You also do not have to explain why you won't give us your permission. You will receive the same care from your doctor and we will continue to store your data and materials to treat you, now and in the future. But we will not use your data for scientific research.

An employee from the outpatient clinic or department where you have an appointment can register your choice in your file during your next visit.

You can withdraw your consent at any time. The results of scientific examinations that may have been obtained with your data before that time will remain.

Would you like to know more?

Your physician may be able to help you further. You can also contact us on weekdays at 020-5129111 or privacy@nki.nl if you have any questions.