Finding and collecting data

Data from studies with biobank samples

In Swedish biobanks, there are samples and data from many research projects where the samples and data can be used for research developed after the samples have been collected. Together with the Swedish social security number-based the registers, for example, it will be possible to study risk factors for disease, or signals of onset disease, in samples taken before the disease manifested itself.

Finding data in repositories

Datasets can be found in repositories.

There are controlled access repositories for sensitive data such as the European Genome-Phenome Archive, discipline-specific repositories and general data repositories such as Zenodo and Figshare.

Re3data is a register of data repositories that maps platforms for research data from all over the world. It lists both general, specific and institutional research data. 

Researchdata.se is a national web portal where you can find, share, and reuse research data from a wide range of disciplines. The portal focuses on searchability and access to data, making it easy to navigate thousands of datasets to find what you are looking for. Researchdata.se also provides practical information on professional research data management in accordance with the FAIR principles, along with services and training resources from Swedish National Data Service (SND) and other national and international organizations. Researchdata.se was created at the initiative of SND a national research infrastructure with expertise in management and accessibility of research data. The portal is an important part of SND’s efforts to realize the goal from EU and the Swedish government of open access to publicly funded research data from 2026.Researchdata.se also serves as a platform for national collaboration between research infrastructures and has developed in cooperation with several key organizations in the field of research data, such as the Bolin Centre for Climate Research, Huminfra, InfraVis, NBIS, SBDI, SciLifeLab, SITES, and Swedigarch.

For some external databases/repositories, data access requests have to go through the KI Compliance and Data Office since the database providers require that KI vouches for its researchers

Finding register data

Register data is a good way of getting large amounts of data for analysis, data that in most cases already has been collected and is available for research.

Sweden is known for its quality registers, and in combination with the Swedish personal identification numbers (personnummer), these provide great possibilities for merging and adding value to the data.

In order to use register data for research, ethical approval is needed as well as approval from the agency or organization that provides the source data.

Below some common sources for register data are listed:

• Socialstyrelsen (the National Board of Health and Welfare)
• SCB (Statistics Sweden)
• RUT (registerforskning.se)
• Biobank Sverige
• National quality register
• QRC Stockholm
• The Swedish Twin Registry

Examples of tools/resources for data collection

REDCap

eHealth

Sensivo