Participating in the study: What can you expect?

Participating in the screening study can have advantages as well as disadvantages. You can find further information about the most commonly encountered advantages and disadvantages below.

Advantages

Early detection of lung cancer reduces the risk of dying from lung cancer (by approximately 24%).

Your prospects will improve if lung cancer is treated at an early stage.

Treatment is often less invasive if lung cancer is discovered early.

The CT scan is painless and is completed within 10 minutes. A contrast medium is not used.

Disadvantages

You may start worrying or feel anxious when being examined or waiting for the result.

Even after further examination, it may transpire that you do not have lung cancer.

A CT scan is based on X-rays.

Lung cancer may be discovered that is growing so quickly that treatment is no longer possible

Lung cancer may be discovered that is growing so slowly that it will not have caused you any inconvenience during your life.

More information about participation

It will not cost you anything to take part in the study. 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 able to claim your travel expenses.

For approximately 8 in every 100 participants, the CT scan will show abnormalities that require further examination by a lung specialist. This will no longer be part of the 4-In-The-Lung-Run study. As soon as you consult the lung specialist, all costs will fall under your health insurance. This is also how things were arranged in other population studies in the Netherlands. Further examinations deemed necessary by the lung specialist may be (partly) charged against your deductible. Some medicines are also subject to a personal contribution.

Your details will be processed in encrypted form. This means we will use a personal study number instead of your name and address. Researchers will only see the study number and will thus never use your name in the articles or reports that they write. This means researchers cannot know to whom the details belong.

Your details, like your name and address, can only be accessed by a few members of the study team. This is needed to, for example, invite you for the CT scan or to send the result of the CT scan.

All employees comply with the General Data Protection Regulation and the Privacy Regulations of the Erasmus MC. All information about you will only be used for the 4-IN-THE-LUNG-RUN study. The Medical Treatments Agreement Act (WBGO) stipulates that all data must be retained for a period of 15 years after stopping the study. All data will be destroyed after this period.

The informed consent will ask you to provide the following 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.