Your rights

Participation in the study is voluntary. You can always drop out of the study, even if you have agreed to participate. There is no need to mention a reason in this case. Whether or not you take part will have no impact on your medical care. 

The CT scan will only show the area around the lungs. During the scan, the lab technician will not look for abnormalities in other organs. Nonetheless, there is a small chance of coincidentally discovering an abnormality that has nothing to do with lung cancer. 

You can personally decide whether or not you want to be informed if another abnormality is discovered. 

In fact, you have the right to know, as well as the right to not know. That is why we ask you to mention on the informed consent whether or not you want to be informed if another abnormality is discovered coincidentally. If you provide consent, the study team will inform your GP about the matter. The GP will then contact you.

Even though you indicated that you do not wish to be contacted if an abnormality is discovered coincidentally, the doctor may still do so if s/he believes that not telling you could be dangerous to your health or the health of people around you Naturally, the doctor will consider this matter carefully and will not make the decision alone. In this case, advice will be requested from an independent committee. These people will have nothing to do with the study. Of course, these people will not be aware of your identity; they will only see a code.

Do you have doubts about participating or do you have a question that you would prefer to ask someone other than our researchers? Then you can phone or send an e-mail to an independent doctor:

Tel: 010-7043719

E-mail: a.vanderheide@erasmusmc.nl 

The independent doctor is not involved in the study but knows everything about it.

We will pay for all examinations that are needed for the study. Namely, the CT scans for which you will be invited. You do not have to pay anything for them and they will also not be charged via your health insurance. You will be referred to a lung specialist if the CT scan shows an abnormality in the lungs. The lung specialist will then conduct further examinations and treat you if necessary. The study will stop, and regular healthcare will start, from the moment that you are referred to the lung specialist. From this moment on, care-related costs will be covered by your health insurance. 

Doctors and hospitals have a liability insurance in case something goes wrong. But there is very little chance of something going wrong.

You will be able to claim your travel expenses. These are the costs that you incur when travelling to the hospital where your CT scan will be carried out. 

We need your consent before you can participate in the study. 

The informed consent will ask you to provide this consent:

• Would you like to take part in the study?
• Can we monitor information about your name, address details and town/city in the Key Register of Persons (previously the Municipal Basic Administration), so that we can inform you about, for example, the result of the examination? This will also allow us to take into account your death if necessary. In this case, we will not approach your descendants.
• Can we collect 3 vials of blood in order to analyse substances in the blood that could be related to lung cancer? (Depending on location)
• May we share the results of the examination with your GP?
• May we inform your GP if we find something unexpected on the CT scan
• May we request information about your health, which is relevant to this study, from your treating physician and other care providers?
• If necessary, may we ask the Centraal Bureau voor Genealogie and Statistics Netherlands (CBS) for the date and cause of death?
• May we ask your healthcare insurer about the medical costs you incurred in relation to your lung cancer? When doing so, none of your (medical) details will be shared with your health insurer.
• May your study data (without name, address and date of birth) be used for other related medical/scientific research?

All (medical) information will only be used for the 4-IN-THE-LUNG-RUN study. We will not give medical information about you to any of the above-mentioned organisations. Data will also be processed after encryption, which means only a few authorised people will be able to access details like your name, address, etc. Your personal details will only be used for invitations and when informing you about the result of the CT scan.