Privacy and data

Research data

Pseudonymisation

The study population is identified from the Total Population Register at Statistics Sweden. Linkage using personal identity numbers is carried out by the National Board of Health and Welfare in contact with the respective registers. Only pseudonymised files (anonymised for the recipient), identified by index numbers, are returned to the researchers. The key linking index numbers to personal identity numbers is held by Statistics Sweden, which enables the cohort to be updated every two to three years.

Storage

The pseudonymised data are held in a central project storage folder at the Department of Medical Epidemiology and Biostatistics, Karolinska Institutet, subject to KI's IT policy, with tiered access granted on the principal investigator's approval. Only members of the research group can access the data, and all analyses are carried out in the storage folders using a virtual desktop (VDI).

Retention

Data are retained for at least ten years after publication.

Storage of metadata

All metadata are documented and stored in KI's electronic laboratory notebook (ELN). All researchers involved in the project have access to it.

Publication

Results are only ever published at group level. Nothing that could identify an individual is published.

Data availability statement

The individual participant data in COSMOHS were subject to ethical approval and cannot be shared publicly. Data from the pseudonymised administrative health registries are not freely available due to protection of the personal integrity of the participants.

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