Information for the invitees in the population surveys at the Cancer Registry
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The Cancer Registry invites individuals with and without cancer to share information about their health and quality of life. If you have received an invitation, you can read more here about why this is, and what it entails to participate.
The treatment of cancer is becoming increasingly effective, but it can be demanding, and some experience late effects – and some only notice this long after they have received cancer treatment.
To map the burden of such ailments in the population, we at the Cancer Registry are now inviting people with and without cancer to participate in population surveys about health and quality of life.
What does the survey consist of?
This is information that we cannot obtain in any other way than by asking those concerned directly about how they experience their health and quality of life. To find out more about which ailments are common in the general population, and which ailments can be linked to cancer and cancer treatment, we also send invitations to individuals who do not have cancer.
We use questionnaires to gather this information, and most invitees are asked to respond to questions three times over a three-year period.
We measure health and quality of life both generally and specifically targeted at each type of cancer. Therefore, all our population surveys consist of two main parts.
- The first main part concerns general health, overall condition, and quality of life. It is common to all population surveys so that we can compare across cancer types.
- The second main part focuses on conditions and ailments that may arise in individuals with exactly that type of cancer.
We use validated questionnaires, mainly from European Organisation for Research and Treatment of Cancer (/www.eortc.org).
Safe and voluntary to participate
Your invitation will be available on Helsenorge. Logging in there is done using bankID or another secure electronic identification.
The information collected is treated with strict confidentiality. The identities of the participants are concealed from those who process the data. Only a few specially authorized employees at the Cancer Registry have access to the data, and all are under confidentiality obligations. Results are published at the group level to ensure that no one can be recognized.
The collection is based on consent and falls under the Regulations on population-based health surveys, which contain specific conditions for collecting and further processing health information in the surveys.
A privacy impact assessment has been conducted, and a data protection officer has been consulted in the process. In addition, a risk and vulnerability analysis of the solutions used has been carried out and approved.
More than 38,000 new cancer cases each year
In recent years, more than 38,000 new cancer cases have been registered in Norway each year. In 2024, 38,811 new cancer cases were recorded.
3 out of 4 live more than 5 years after a cancer diagnosis, and by the end of 2024, 347,867 Norwegians were alive after having received a cancer diagnosis at some point in their lives.
In the long term, the goal is for most people who receive a new cancer diagnosis to have the opportunity to report to us on how they are doing.
Important to have responses from both cancer patients and people without cancer
In order to get a good overview of the prevalence of late effects, it is important that both cancer patients and people without cancer participate in our population surveys. This will help us see which issues are more related to, for example, age, and which issues we can assume are associated with cancer and cancer treatment.
Some things are already known, such as the fact that some women who have been treated for breast cancer experience fatigue (persistent and recurring exhaustion). Through the population surveys, we will be able to monitor developments over time and see if new types of treatments reduce the extent of fatigue in this group.
We will also gain better knowledge about the prevalence of late effects in cases where we currently know little about the extent and burden.
The goal of the surveys and this knowledge is to improve the treatment offerings for cancer patients even further, and to reduce the extent of late effects after cancer treatment.
Frequently asked questions
When should I fill out the questionnaire?
We hope you can fill out the questionnaire as soon as you have the opportunity. If you have already received treatment when you submit the form, we will take that into account when we analyze the data.
What if there are some questions I don’t want to answer?
You do not need to answer all the questions. However, we still want to receive the answers you are willing to provide.I have already been treated.
Is there any point in filling out the questionnaire then?
Yes, we hope you will fill out the form anyway. Your results will be able to be tracked over time if you choose to respond to the questionnaires in rounds 2 and 3.There are other reasons besides cancer that make me feel unwell.
Why don’t you ask if I have other illnesses?
We connect the information from the questionnaire with information about you that may be registered in the Cancer Registry, other statutory health registries such as the Norwegian Patient Registry, the Prescription Registry, etc., and information from Statistics Norway.
Therefore, there is a considerable amount of relevant information we do not need to ask you about, and it will take less time for you to fill out the questionnaire.
Have I been diagnosed with cancer?
My doctor has not mentioned anything about that.
The invitation you received is not a notification that you have been diagnosed with cancer.
Both people without cancer and those who have been diagnosed with cancer are invited to our population-based surveys/research projects.
If you are still in doubt, we recommend that you contact your doctor.
I am unsure if I submitted the questionnaire.
If you have received a copy of your submitted form in your inbox on Helsenorge or in your digital mailbox (depending on how you received the invitation to the population/survey), you have submitted the form and thus participated in the survey.
I am having technical problems filling out the form. What can I do myself?
It might be that your browser does not support the form. You can try opening the form in a different browser (the most common browsers).You can try opening the form in another browser (the most common browsers are Microsoft Edge (formerly known as Explorer), Google Chrome, Mozilla Firefox, and Safari).
- Go to the message you received in your inbox on Helsenorge or your digital mailbox.
- Hover your mouse over the link to the questionnaire and right-click.
- Choose "copy link address" (or similar).
- Open another browser.
- Paste the link in the address bar by hovering over the address bar, right-clicking, and selecting "paste."
- To access the form, you will need to log in again using, for example, BankID.
Can I save the questionnaire so that I do not have to fill it out all at once?
Yes, if you received the invitation on Helsenorge.no, you can save your form at any time. You do this by exiting the sub-form you are in ("back to my forms" at the bottom of the sub-form), and then clicking "save form" at the bottom of the page you arrive at. You can continue with the form whenever it suits you by following the link in the invitation in your mailbox in Helsenorge.