Q-2006: Epidemiological questionnaire in BreastScreen Norway

The purpose of the survey was to improve the basis for evaluation and quality assurance in BreastScreen Norway, as well as research on cancer and BreastScreen Norway in particular.

During the study period, the Cancer Registry of Norway sent the questionnaire to all women in the target group of BreastScreen Norway together with an invitation to participate in the survey. The form was sent together with the invitation to mammographic screening. An information letter about the survey was also enclosed.

The questionnaire consisted of two parts; part 1; Health conditions before age 50, and part 2; Health conditions today. The questions in part 1 addressed demographic variables and health indicators that are stable over time, such as country of birth, age at first birth, number of births, breastfeeding, age at last menstruation, as well as information about physical activity, alcohol and other lifestyle factors. The questions were formulated so that they collected information from different time periods in the women's lives before they turned 50. This part was only answered once by each woman who participated in the survey.

Part 2, Health Conditions Today, addressed conditions that may change over time. The questions included weight, height, use of hormone preparations in connection with menopause and contraception, menstrual status, physical activity, alcohol and other lifestyle factors, and were formulated so that they collected information from the time the women who participated in the survey actually answered the questions. The form was sent to the women together with each invitation to BreastScreen Norway.

The study participants submitted completed questionnaires to the radiographers in connection with their attendance in BreastScreen Norway, or sent the forms directly to the Cancer Registry by mail.

More than 600,000 women who were invited to participate in the survey submitted one or more questionnaires during the study period, and a total of about 1,700,000 forms have been collected. Just under 400,000 women answered part 1 of the questionnaire and just over 500,000 women answered at least one copy of part 2.

How your personal data from Q2006 is used and processed

The information collected through the Q2006 questionnaire is used for evaluation, quality assurance and research in BreastScreen Norway, and for cancer research. The information from the questionnaire may be linked with other information from the Cancer Registry of Norway, and collated with other health registries and data sources in accordance with the consents given and applicable legislation. Other disclosure and use of the information may also occur within the scope of the consents given and the purpose of the study.

How the information is stored

The information collected through the Q2006 questionnaire, which was in use in BreastScreen Norway from August 1, 2006 to December 31, 2015, is stored indefinitely in a secure area at the Cancer Registry of Norway.

Only a few, specifically authorized persons, who are subject to a duty of confidentiality, have access to directly identifiable personal information about you. It will not be possible to trace the individual's identity in published results from the survey.

Legal basis for Q2006

The Cancer Registry of Norway originally had a license from the Norwegian Data Protection Authority to collect and process personal and health information in the survey, cf. license dated 5/9-2005 (ref. 2005/1084-2). After the new Personal Data Act (LOV-2018-06-15-38) came into force, which incorporates the General Data Protection Regulation (EU 2016/679), an internal assessment was made of the legality of further processing of information collected in the survey. This assessment was made in consultation with the Data Protection Officer at Oslo University Hospital. It was concluded that the Regulations on Population-Based Health Surveys FOR-2018-04-27-645 cf. Section 6-1, provide legal basis for continuing the survey. It was assessed that the processing is in line with the original consent and in the best interests of society and the individual, and that the privacy of the participants is sufficiently safeguarded.

The basis for processing under the General Data Protection Regulation is Article 6(1)(e) and Article 9(2)(j) or (i). The Regulation on population-based health surveys provides a supplementary legal basis for the continued processing of data under Article 6(3) of the General Data Protection Regulation and an exception to the prohibition on processing special categories of personal data in accordance with Article 9(2)(j) and (i).

Voluntary participation

Participation in the survey was and is voluntary. Consent to participate in the survey can be withdrawn at any time and without specific justification, cf. Regulations on population-based health surveys § 2-7. Withdrawal of consent means that the use ceases, and that the personal and health information about you is deleted, unless the information is anonymized or the information has already been included in performed analyses.

If you withdraw your consent, you can contact the Cancer Registry at project manager Solveig Hofvind, telephone 22 92 88 28 or e-mail sshh@kreftregisteret.no. There will be no consequences for you, your possible follow-up or future offers in BreastScreen Norway if you choose to withdraw your consent to participate in the survey.

Privacy and participants' rights

You have the right to information and access to data

You have the right to information and access to the information processed about you in accordance with the Regulations on Population-Based Health Surveys § 6-1 and the Health Register Act § 24. This means that participants must be regularly informed about the survey, including how personal and health information is used. See an overview of scientific publications further down the page.

You also have the right to access who has had access to or been given personal and health information about you. However, there are some exceptions to the right of access, cf. the Personal Data Act § 16 and 17. More information about the right of access and the procedure can be found here: kreftregisteret.no/Generelt/Om-Kreftregisteret/Personvern/Rett-til-innsyn

You can request correction of information
If you believe that the information registered about you in consent-based health examinations and in research projects is incorrect or incomplete, you can demand that it be corrected in accordance with the Health Register Act, Section 25. The data controller for the Cancer Registry shall correct or supplement the information without undue delay. Exceptions to the right to correction in the Personal Data Act, Section 17, second paragraph, apply.

You have the right to have your information deleted
Your right to have information about yourself deleted from the survey follows from Section 25 of the Health Register Act and Article 17 of the General Data Protection Regulation. Article 17 of the General Data Protection Regulation also applies. The provision contains, among other things, exceptions to the right to deletion if the processing of the information is necessary for scientific research purposes and deletion would make it impossible or seriously impede the achievement of the objectives of the processing.

Contact information and complaints procedure

The Cancer Registry of Norway is organized under the Norwegian Institute of Public Health (NIPH), which is the data controller for the survey. If you have any questions about the survey, you can contact project manager Solveig Hofvind by phone at 22 92 88 28 or email  sshh@kreftregisteret.no. Contact information for the data protection officer for NIPH, email: personvernombud@fhino. Please be advised that health information must not be sent by email, and that such inquiries will not be answered.

If you believe that NIPH is processing personal data in an unlawful manner, you can contact the Norwegian Data Protection Authority on their website Hvordan klage til Datatilsynet.

If you wish to contact the data protection officer at FHI, you can send an email to personvernombud@fhi.no.

Scientific publications

Below is a selection of scientific publications that have used data from Q2006.

1. Moshina N, Sebuodegard S, Hofvind S. Is breast compression associated with breast cancer detection and other early performance measures in a population-based breast cancer screening program? Breast Cancer Res Treat. 2017;163(3):605-13.
2. Ellingjord-Dale M et al. Alcohol, Physical Activity, Smoking, and Breast Cancer Subtypes in a Large, Nested Case-Control Study from the Norwegian Breast Cancer Screening Program. Cancer epidemiology, biomarkers & prevention: a publication of the American Association for Cancer Research, cosponsored by the American Society of Preventive Oncology. 2017;26(12):1736-44.
3. Tsuruda KM et al. Validity and reliability of self-reported health indicators among women attending organized mammographic screening. Scand J Public Health. 2018;46(7):744-51.
4. Ellingjord-Dale M et al. Parity, hormones and breast cancer subtypes - results from a large nested case-control study in a national screening program. Breast cancer research: BCR. 2017;19(1):10.
5. Ellingjord-Dale M et al. Number of Risky Lifestyle Behaviors and Breast Cancer Risk. JNCI cancer spectrum. 2018;2(3):pky030.
6. Hjerkind KV  et al. Volumetric Mammographic Density, Age-Related Decline, and Breast Cancer Risk Factors in a National Breast Cancer Screening Program. Cancer epidemiology, biomarkers & prevention: a publication of the American Association for Cancer Research, cosponsored by the American Society of Preventive Oncology. 2018;27(9):1065-74.
7. Moshina N et al. Automated Volumetric Analysis of Mammographic Density in a Screening Setting: Worse Outcomes for Women with Dense Breasts. Radiology. 2018;288(2):343-52.
8. Moshina N et al. The impact of compression force and pressure at prevalent screening on subsequent re-attendance in a national screening program. Prev Med. 2018;108:129-36.
9. Moshina N et al. Breast compression parameters and mammographic density in the Norwegian Breast Cancer Screening Programme. Eur Radiol. 2018;28(4):1662-72.
10. Bjelland EK et al. The relation of age at menarche with age at natural menopause: a population study of 336 788 women in Norway. Human reproduction (Oxford, England). 2018;33(6):1149-57.
11. Bjelland EK et al. The association of birthweight with age at natural menopause: a population study of women in Norway. International journal of epidemiology. 2019.
12. Sandvei MS et al. Menopausal hormone therapy and breast cancer risk: effect modification by body mass through life. European journal of epidemiology. 2019;34(3):267-78.
13. Holen A et al. Screening at stationary versus mobile units in BreastScreen Norway. Journal of medical screening. 2020;27(1):31-9.
14. Gottschalk MS et al. Temporal trends in age at menarche and age at menopause: a population study of 312 656 women in Norway. Human reproduction (Oxford, England). 2020;35(2):464-71.
15. Larsen M et al. Factors associated with attendance and attendance patterns in a population-based mammographic screening program. Journal of medical screening. 2021 Jun;28(2):169-176
16. Gottschalk MS et al. The relation of number of childbirths with age at natural menopause: a population study of 310 147 women in Norway. Hum Reprod. 2022 Jan 28;37(2):333-340.
17. Robsahm TE et al. Sociodemographic factors, health indicators and lifestyle factors among participants in BreastScreen Norway 2006-2016 – a cohort profile Norsk Epidemiologi 2022; 30 (1-2): 69-75.
18. Louro J et al. Personalized Breast Cancer Screening: A Risk Prediction Model Based on Women Attending BreastScreen Norway. Cancers 2023, 15, 4517.
19. Langås JR et al. The dose-response relationship of pre-menopausal alcohol consumption with age at menopause: a population study of 280 497 women in Norway. Int J Epidemiol. 2023 Dec 25;52(6):1951-1958.