Ethics and data security

The CoNARTaS cohort is based solely on national registry data and involves no interventions or personal communication with the participants. The data extraction and linkages are approved by the different national registry keeping authorities, data protection agencies and ethical committees as required in each of the four countries. According to the national laws in Denmark and Finland, studies using only registry data do not need approval from the scientific ethical committees. Permission was granted from the regional ethics committees in Norway (REK 2010/1909) and in Gothenburg, Sweden (Dnr 023-09, T431-09, Dnr 214-12, T-422-12, T-516-15, T-233-16, T-300-17, T-1144-17, T121-18, T1071-18, 2019-02347). For all included individuals, the unique personal PIN codes were replaced with study numbers before data were transferred to the researchers. Thus, no directly person-identifiable data are used or transferred across borders.

For all health-related data on individuals, data security and privacy are a major ethical concern. We use a data platform for storing and analysing data provided by Statistics Denmark. The project server can be accessed only by group members and requires a two-step login procedure. The group members are not able to extract individual-level data (micro data) from the platform and store them at other locations. Thus, the data sharing solution prevents any uncontrolled spread of potentially sensitive data.

According to the strict data protection and privacy rules at Denmark statistics (DST) the CoNARTaS data can never be transferred outside their platform.