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. In a digital brochure from Biobank Sweden 15 studies with biobank tests are described. It is Swedish medical research projects that allow other researchers use blood tests or test results. 

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. 

Swedish National Data service SND is a national platform for submitting research data that can be shared openly or made searchable by merely describing metadata to a dataset which for various reasons cannot be shared openly. Karolinska Institutet has been included since 1 January 2018 together with several other major Swedish universities in a consortium with SND. SND has a guide on data management where you get support in how data can be handled throughout the research process. A web form is available on SND's website to describe and submit research data.

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 is 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

NIH repositories

For an overview of NIH-affiliated repositories visit NIH Data Sharing portal.

All requests for access to NIH:s dbGaP database have to go through the KI Grants Office, since the NIH requires that the university vouches for all its researchers.

The data access request form should be filled in and emailed to compliance@ki.se.

Examples of tools/resources for data collection

REDCap

eHealth

Sensivo