CONSENT SCIENTIFIC RESEARCH

USE OF YOUR DATA AND MATERIAL FOR SCIENTIFIC RESEARCH

For what do we ask your consent?

WHAT IS THIS BROCHURE ABOUT?

At the Antoni van Leeuwenhoek (AVL), data and body material from you are stored for your diagnosis and treatment. They are also important for scientific research. For that use, we ask your consent.

When you are a patient with us, we collect and store various personal and medical data and body material from you for the purpose of your treatment. This may include scans, blood, urine or tissue. We would also like to use some data, images and body materials for scientific research into cancer, related disorders and to improve care. This is called “further use". No additional data or body materials need to be collected for this purpose. We may use previously collected materials if you give us your prior consent. This folder tells you more about this form of consent, about scientific research and why it is so important.

WHY IS IT IMPORTANT THAT YOU GIVE CONSENT?

When you give us consent, you help us achieve our goal of eliminating cancer from the world. This is because scientific research teaches us more about how to prevent, treat and cure cancer and related conditions and how to improve our care. In addition, scientific research also gives us more insight into how to improve quality of life. This is important for all current and future patients.

We recommend that you read this brochure carefully. Then we ask

you to decide whether or not to give us consent or not. You can communicate your decision when you register

in the AVL to our employee. He or she will record this in your patient file.

You can also communicate your choice electronically via MijnAVL.

If you do not give consent, we may still ask you to participate in other specific research. This may involve, for example, completing a questionnaire or participating in clinical studies (trials). In that case, we will always ask you separately for consent to do so.

CONSENT SCIENTIFIC RESEARCH

What kind of research do we do?

We do different kinds of scientific research on cancer, including genetic research. We often do this together with other researchers, both in the Netherlands and abroad. We want to understand and treat cancer and related disorders better and better. We also want to continue to improve the quality of life for patients. Therefore, we also conduct scientific research into treatment and patient care. We publish important results of scientific research in scientific journals. You cannot be identified in these.

What, among other things, has been studied in recent years using stored data and body material? And what does this mean for future patients?

• We have been investigating whether we can find new features in tumors that can predict the outcome of treatment. In 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 treatment that damage less healthy tissue. With better radiation, we are able to treat the tumor better and damage less healthy tissue.
• We have studied the effects that cancer treatment can have on patients' quality of life. With this knowledge, we can better guide cancer patients and their loved ones during and after the disease.
• We have studied whether we can use artificial intelligence to better understand and treat cancer.
• We are also investigating how we can continually improve patient care. Small improvements often have a big effect on the care we provide to patients.
• We have studied why certain treatments work for some patients and not as well or not at all for others. What genetic changes cause these differences? We use this knowledge to develop new treatments.
• We have investigated why a treatment does not work, or works less well, for some patients after a while. How can we prevent this?

For more information on scientific research involving the use of already stored patient data and body material, please visit: https:// www.avl.nl/het-nederlands-kanker- instituut/consent/

WHY IS MY BODY MATERIAL BEING STORED?

Blood, tissue or urine is used to determine exactly what you have. We keep the remaining material. If you return to us with new symptoms, we can use this material to investigate your symptoms. Scientific research with your body material takes place only if there is enough left over.

Tissue is always kept for any necessary diagnoses and treatments in the future.

For which data and materials do we ask your consent?

For scientific research the following

can be used:

• • Data about yourself. For example, your height, weight, gender, age.
  • Data about your disease(s). And also what medications you are taking, what treatment you are receiving and its results.
  • Images of your body. For example, x- rays, ultrasounds and scans.
  • Voice recordings. For example, recordings of patients' voice during a visit to a speech therapist.

Body material. 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 exactly what you have.

For scientific studies also called trials, this consent does not apply. Your consent is always requested separately for participation in such a study.

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

• We use it to conduct scientific research on cancer and related diseases: how can we prevent, treat and cure these diseases? And how can we improve patient care?
• We cooperate a lot with scientific researchers at other institutions and with researchers at companies. Sometimes these are researchers abroad. This collaboration ensures even better research results. When we collaborate with other researchers, we want to share your data and materials

with them as well.

CONSENT SCIENTIFIC RESEARCH

• We want to share your data with agencies that record medical and other data such as:
  • The registration of causes of death of the Central Bureau of Statistics (CBS)
  • The Dutch Cancer Registry (NCR).

At www.avl.nl/privacy-statement you can see an overview of all the bodies with which we (have to) share data.

Very occasionally, a researcher may come across something that could be important to your health or the health of your family members. In that case, your doctor or family doctor may inform you.

We handle your data very carefully.

Below you can read how we do that.

• We comply with rules and laws related to data processing and data security (such as the General Data Protection Regulation).
• And to the agreements for scientific research between doctors, researchers and patient associations. These agreements are in the “Code of Conduct for Health Research” (COREON).
• We store your data electronically in your patient record. We do this in a secure manner. Only authorized persons have access to your record.
• Do we need data from your patient file for scientific research? Then we work as much as possible with encrypted data so that you cannot be identified by the researcher. A review committee evaluates research with patient data and/or body material in advance.
• Do we collaborate with researchers outside the EU? Then we share your data only if they handle 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.
• Is a researcher writing an article about the results of a scientific study and has that researcher used data or materials from you? If so, readers of the article will not know that the data are yours.

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CONSENT SCIENTIFIC RESEARCH

Our Privacy Statement tells you more about how we handle your data and materials. There you can also read what rights you have. Our Privacy Statement can be found at www.avl.nl/privacy-statement.

Do we make a profit from the research?

We do not make a profit from scientific

research. Nor do we resell your data and materials to companies looking to make a profit. Do we receive money for a study? Then we use it for patient care or new scientific research.

How long is your consent valid?

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

Don't want to give consent or withdraw your consent?

WANT TO KNOW MORE?

You can find more information and answers to frequently asked questions at https://www.avl.nl/ het-nederlands-kanker-instituut/ consent/

If you have any questions about this folder, your doctor can help you further. You can also contact us on workdays at 020-5129111 or email privacy@nki.nl.

If you do not give us consent, this will not affect your treatment or your contact with us. You also do not have to tell us why you are not giving consent. You will simply receive the same care from your doctor. And we will continue to keep your records and materials to treat you, now and later. But we will not use your data for scientific research.

A staff member at the outpatient clinic or department where you have an appointment may record your choice in your record during your next visit.

You can very simply communicate and manage your choice through your personal patient portal MijnAVL. Also, a staff member at the outpatient clinic or department where you have an appointment can record your choice in your record during your next visit.

You can withdraw your consent at any time. However, the results of scientific studies that may have been obtained with your data before that time will remain.

Are you not communicating a choice?

If you do not make a choice, in some

cases we may use your data and materials for research. The review committee will then determine if this is allowed. In all cases, we follow the laws and regulations and the Code of Conduct for Health Research. Some types of research we never do if you have not made a choice, such as research with your complete genetic data. You can still make your choice at any time.

Additional information

The hospital collects data and tissue samples from you for your diagnoses and treatment. These materials can be used for scientific research.

Please, support our goal to create a world without cancer. Surf to

https://www.avl.nl/en/our-research/consent-scientific-research/ for additional information.

Antoni van Leeuwenhoek

Postbus 90203

1006 BE Amsterdam

020 512 9111

Bezoekadres Amsterdam

Plesmanlaan 121

1066 CX Amsterdam

Bezoekadres Hoofddorp

Spaarnepoort 1

2134TM Hoofddorp www.avl.nl

DECEMBER 2024