Population survey and research project on colorectal cancer
All patients with colorectal cancer receive some form of treatment, either surgery and/or radiotherapy, chemotherapy or palliative care.
Although these treatments improve survival or quality of life, they can also produce harmful complications that can affect life after treatment.
We want to understand more about the extent and burden of such late effects, so that treatment and cancer care can be even better and more precise. Therefore, we invite people who are diagnosed with bowel cancer from 1 January 2021 to a population survey on health and quality of life.
We also include a control group, consisting of people without colorectal cancer, and they are invited to answer the same questions to provide a basis for comparison and provide a measure of the general health and quality of life of the population.
We use validated questionnaires, mainly from the European Organisation for Research and Treatment of Cancer.
Affects more than 4400 each year
Colorectal cancer is the second most common cancer in Norway that affects both sexes. In 2018, more than 4400 men and women were diagnosed with bowel cancer.
The prognosis for colorectal cancer has improved significantly over the past 25 years, and we know that in Norway today there are more than 35,000 people alive after receiving this diagnosis.
About half of patients are cured after treatment. The other half either have incurable disease already at diagnosis, or will later develop incurable spread or have a relapse.
The results of the population survey are published in the annual report from the Norwegian Colorectal Cancer Registry, which can be found here.
Research project on health, bowel function and quality of life
All women and men who have received a bowel cancer diagnosis after 1 January 2019, as well as a control group without colorectal cancer, will be invited to participate in the study.
The survey consists of a set of questionnaires. Those who have had bowel cancer will receive the questionnaire approximately one year after diagnosis.
The information from the questionnaire is stored in a secure area in the Cancer Registry's approved technical solution, and is collated with relevant health information that may be registered about you in the Cancer Registry of Norway and other regulated health registries such as the Norwegian Patient Registry and the Norwegian Prescription Database, etc. and information from socioeconomic data in Statistics Norway.
The study originates from the National Quality Registry for Colorectal Cancer, which is administered by the Cancer Registry.
What happens to the information about you in the research project?
The information registered about you will only be used as described under the purpose of the project, and is planned to be used by 2026. Any extensions in use and storage period may only take place after approval from REC and other relevant authorities.
You have the right to access what information is registered about you, and the right to have any errors in the information registered corrected. You also have the right to access the security measures when processing the information. You can complain about the processing of your information to the Data Inspectorate and the Data Protection Officer at Oslo University Hospital.
All information will be processed without name and national identity number or other directly recognizable information. A code links you to your information through a project-specific link key. Only specially authorised persons with a duty of confidentiality at the Data Delivery Unit at the Cancer Registry of Norway have access to this key.
If the information is disclosed for other research or quality assurance purposes, the recipient of the information must document a legal basis.
If the information is to be used for research, the recipient must have prior approval from the Regional Committee for Medical and Health Research Ethics.
The information about you will be stored for five years after the end of the project for documentation purposes.
You can find information about privacy in the population surveys here.