No. Proposals for scientific research are reviewed. Two points are paramount:

• The patient must continue to be provided with the best care possible for him/her. Research must not get in the way of that.
• In addition, the research must be useful in relation to the patient's condition.

A review board reviews the research: IRB (Institutional Review Board) or the METC (Medical Ethical Review Board). It is possible that this is an external review board, which reviews in a similar way as the review board at the AVL. We make very specific agreements about this.

• We use it to conduct scientific research on cancer and related diseases: how can we prevent, treat and cure them? And how can we improve patient care?
• We collaborate a lot with scientific researchers at other institutions and with researchers at companies. Sometimes these researchers are from abroad. This collaboration ensures even better research results. When we collaborate with other researchers, we also want to share your data and materials with them.
• We want to share your data with agencies and organisations that record medical and other data such as:
  
  • The Central Bureau of Statistics’ (CBS) causes of death registry.
  • The Dutch Cancer Registry (NCR). NCR may also share the data with scientific researchers at other institutes. This data is coded, so the data is not directly traceable to you.
  • Palga. Palga is an encrypted central archive of information about stored bodily material in the Netherlands. The bodily material itself remains at the Antoni van Leeuwenhoek. Palga can share the encrypted data with scientific researchers.
  • Hartwig Medical Foundation (HMF). From a small proportion of our patients, HMF is imaging the genetics of the tumor. If this also happens to you, the doctor will let you know. If you give permission, HMF may also share this data with scientific researchers. They do this only if a review board has approved it.
• 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, the doctor or family doctor will inform you.

• We have been investigating whether we can find new features in tumors that can predict the outcome of treatment. That way, doctors can make a better choice for the best treatment together with the patient.
• We have done scientific research on new and better ways of radiation therapy. 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 researched why certain treatments work for some patients and not so well 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 and how we can prevent this.
• We have studied how we can continually improve patient care. Small improvements often have a big effect on the care we provide to patients.
• We researched the immune system. How can we use this system to defend the body against cancer? The latest immunotherapy treatments have been created with this knowledge.

No. 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.

• We value your privacy and we handle your data very carefully. Below you can read how we do that.
• We comply with the rules and laws related to data processing (such as the General Data Protection Regulation (GDPR)) and data security. We also adhere to the agreements for scientific research between doctors, researchers and patient associations. These agreements are in COREON's COREON's Code of Conduct for Health Research.
• We store your data electronically in your patient file. We do this securely. Only authorized personnel have access to your file.
• Do we need data from your patient record for scientific research? Then we work as much as possible with coded data so that you cannot be identified by the researcher. A review board assesses research involving patient data and/or bodily 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.

Our privacy statement tells you more about how we handle your data and materials. There you can also read what rights you have.

• We store your information electronically in your patient record. We do this in a secure manner. Only authorized personnel have access to your file, and they must sign a confidentiality agreement to do so.
• Do researchers need data from your patient file for scientific research? Then we work as much as possible with coded data so that you cannot be identified by the researcher.
• A review committee assesses research involving patient data and/or bodily material in advance.

• No, only if we are required to do so by law will we provide your personal data to regulators or other competent authorities.
• Your data will not be used for insurance premium review, by insurance doctors or occupational health physicians.

Even after a patient has died, we fully adhere to the rules and laws related to data processing and data security with respect to the data and bodily material.