Information about the research
Did you receive a letter? Please click the button below, where you can log in with your assigned password to access informed consent and questionnaire:
The project, Health Related Quality of Life, Long-term and Late Effects from Cancer and its treatment: A Comparative Population Study of Adult Cancer Survivors in Iceland, is a collaborative project of the Icelandic Cancer Society, the University of Iceland, Landspítali, and a specialist from Dutch research institutions.
Aim
The aim of the study is to shed light on late and long-term side effects that can impact the quality of life of those diagnosed with cancer. The quality of life and health of individuals who have completed cancer treatment will be compared to the well-being and quality of life of individuals currently undergoing cancer treatment and those who have never been diagnosed with cancer.
Why?
The results of the study will enhance knowledge about the effects of cancer and cancer treatment on well-being and quality of life, thus providing essential information for developing necessary healthcare services. The results will be used to improve services for those undergoing cancer treatment and also to develop services for individuals who have completed cancer treatment and are dealing with reduced quality of life and health issues thereafter.
Participants
Anyone diagnosed with cancer between 2014 and 2024 who was 18 years of age or older at the time of diagnosis, a total of 10,000 individuals, is invited to participate in the study. These may include individuals who have completed treatment or are currently undergoing cancer treatment.
Six thousand individuals, 18 years of age and older, who have not been diagnosed with cancer were randomly selected from the National Registry and invited to be part of a comparison group.
Individuals in the comparison group play a key role in the study, as comparisons with the general population are necessary to better understand the impact of cancer and cancer diagnosis on quality of life.
How do I participate
Participation in the study involves answering a questionnaire. To participate, click on the login button above and enter your ID number and password that you received in a letter. This will open an informed consent form and a questionnaire that is stored in a secure area at the research company Gallup. There you can confirm whether you agree to participate or decline. If you agree, you can continue and answer the questionnaire. You can also click on a link that you received in an text message and thus enter the research area directly.
You can take a break from answering the questionnaire by closing it. To continue, use the same password that you were sent.
You can also request to have a printed questionnaire sent to your address, free of charge, by calling the researchers at 835-6119 or sending an email to lifsgaedi@krabb.is. You can also request assistance in answering the questionnaire there.
If participating in the study raises difficult feelings, you are welcome to meet with a counselor at Ráðgjafaþjónustu Krabbameinsfélags Íslands.
Research team
The project is a collaboration of the Icelandic Cancer Society, the University of Iceland, Landspítali, and a specialist from Dutch research institutions.
The principal investigator responsible for the study is Dr. Sigríður Gunnarsdóttir, director of the Research Center – Cancer Registry at the Icelandic Cancer Society, and a professor at the Faculty of Nursing and Midwifery at the University of Iceland (UI) and Landspítali (LSH).
The study's co-investigators are:
Freyja Birgisdóttir (FB), Representative of individuals who have completed cancer treatment
Helga Tryggvadóttir (HT), Landspítali, Specialist in oncology at Landspítali
Helgi Birgisson MD PhD (HB), Cancer Registry - Research Center, Chief Physician at the Research Center - Cancer Registry of the Icelandic Cancer Society
Lonneke van de Poll Franse PhD (LvdPF), Professor at the Netherlands Comprehensive Cancer Organisation (NCCO), Netherlands Cancer Institute (NCI) and Tilburg University (TiU)
Nanna Friðriksdóttir RN, MS (NF), Landspítali, Specialist in cancer nursing at Landspítali and Adjunct Professor at the University of Iceland
Thor Aspelund PhD (TA), Professor of bioinformatics at the University of Iceland
Other research staff:
Eva María Guðmundsdóttir (EMG), Cancer Registry - Research Center, Specialist
Nanna Margrét Kristinsdóttir(NMK), Cancer Registry - Research Center, Specialist
Kristjana Sigurðardóttir(KS), Cancer Registry - Research Center, Database Manager
Vígdís Guðmundsdóttir (VG), Icelandic Cancer Society, Specialist:
Data processing
All processing and linking of data will be conducted without revealing personal identifiers. The study is conducted with the approval of the Scientific Ethics Committee (Vísindasiðanefnd) and the Data Protection Authority (Persónuvernd). All use of information from the questionnaire is subject to the permission of the study's principal investigator, the Scientific Ethics Committee, and the Data Protection Authority. Responses to the questionnaires will be stored in an encrypted database at the Icelandic Cancer Registry, and raw data at Gallup will be deleted once the data collection from participants is complete.
If you have further questions about the study or would like more information about your participation, you can send an email to: lifsgaedi@krabb.is