Biobank data

Biobanks collect and store samples and data that can be used in research. The largest biobanks are located in the regions, but government agencies, universities and private actors also have biobanks.

Biobank sample collection

A biobank is a collection of samples from humans or foetuses that are collected, stored and used for specific purposes. Samples can be taken within healthcare for care and treatment, but also for research. They must always be traceable to an individual.

Biobanks' comprehensive sample collections make it possible to study health over time. Technological developments also create opportunities to analyse older samples in new ways, giving researchers access to both historical and current data to identify risk factors and early disease markers.

All biobank samples must be stored in a biobank belonging to a principal with a Swedish organisation number. Biobanks are found in regions, government agencies, universities and private actors.

Regional biobanks

The largest biobanks and sample collections are found in the regions, mainly in clinical pathology and microbiology. Most of the samples are stored for patient care and treatment, for example for future analysis in the event of cancer recurrence. Biobanks can also store sample collections created in research projects. Information about these sample collections is available in the regions' joint IT system, the Swedish Biobank Register (SBR). The register provides an overview of biobank samples taken within healthcare and stored in the regions' biobanks, and can also be used to search for existing samples for research purposes.

Samples and associated data

Biobanks store information about the properties of the sample, such as sample material and storage format, as well as its handling, such as storage temperature.

Biobank coordinators, sample service coordinators and local biobank operations have important local information about variables and systems used to store data on biobank samples. There may also be exceptions for certain sample collections, where data is stored in other systems.

Contact a biobank coordinator, sample service coordinator or local biobank organisation for more information or advice on accessing samples and associated data.

Comprehensive support for biobank samples

Regional Biobank Centres (RBCs) offer information about local sample collections, regulatory and practical support, and individual advice.

The Biobank Sweden website provides comprehensive support for researchers in the Research Guide, which includes:

• information about the legal requirements for research on biobank samples
• information support and guidance for designing research participant information with a focus on biobank-related issues prior to applying for ethical review
• a description of agreements that are often relevant to research using biobank samples
• checklists and guidelines
• a description of the process and information on how biobank samples and data are handled
• frequently asked questions and answers
• contact information for biobank coordinators.