The SAMINOR Study

The Population-based Study on Health and Living Conditions in Regions with Sami and Norwegian Populations – SAMINOR was initiated in 2003. The SAMINOR Study was established due to a lack of knowledge about the health situation of the Sami population in Norway. SAMINOR has a special responsibility for ensuring that the research is carried out in an ethically sound manner, and in a way that respects the diversity and uniqueness of the Sami culture and communities. This indigenous peoples' perspective makes SAMINOR a unique database nationally and internationally. The study is particularly focused on, and adapted for, the Sami population, but also has general relevance for the entire population in the geographical areas covered by the study. To date, SAMINOR has collected data in two waves, SAMINOR 1 from 2003 to 2004, and SAMINOR 2 from 2012 to 2014. SAMINOR 2 consisted of two separate surveys, the SAMINOR 2 Questionnaire Survey and the SAMINOR 2 Clinical Survey. The different surveys include different age ranges and municipalities. In total, 25 municipalities have been included. All inhabitants in the selected areas and age groups are invited. Data is collected from self-administered questionnaires, clinical measurements, and blood samples. Qualitative data is also collected. Data may be linked to national registers and previous health surveys. Research data is stored in EUTRO (Epidemiological Studies in Tromsø), a module-based IT-system for research administration and data management. Serum and clot samples are stored in the biobank at UiT The Arctic University of Norway. Statistics Norway holds the key linking the project-specific ID number with the national identity number for the SAMINOR 1 Survey and the SAMINOR 2 Questionnaire Survey. The Centre for Sami Health Research, UiT the Arctic University of Norway holds the key for the SAMINOR 2 Clinical Survey, which is stored separately from the data on a secure server. The SAMINOR Study is planned, conducted, and managed by the Centre for Sami Health Research at UiT the Arctic University of Norway.

Legislation

The UN Declaration on the Rights of Indigenous Peoples and other international law provisions on indigenous peoples form the basis of SAMINOR’s activities. In addition, SAMINOR’s activities are regulated by the following Norwegian laws and regulations:

• The Public Health Act
• The Health Research Act
• Personal Health Data Filing System Act (The Health Register Act)
• The Personal Data Act
• The General Data Protection Regulation
• The Research Ethics Act
• The Health Personnel Act
• The Patient Injury Act
• The Public Administration Act
• The Freedom of Information Act
• The Patient and Consumer Rights Act
• The Regulations on population-based health surveys
• Ethical guidelines for Sami health research
• The Regulation relating to the rights of children aged 12-16 to consent to participating in medical and health research
• The Regulation relating to the organisation of medical and health research. (Ethical guidelines for Sami health research)

Data controller

UiT the Arctic University of Norway is data controller and responsible for the cohort and the storage of data.

Contact information

www.saminor.no saminor@uit.no 0047 77644000Centre for Sami Health ResearchDepartment of Community MedicineUiT The Arctic University of NorwayPP Box 6050 LangnesN-9037 TromsøNORWAY