Finding and collecting data
Datasets can be found in different places
Collecting healthcare data
In order to transfer data from the health care system to KI for research analyses, it is usually the disclosure (utlämnande) of data that is used and KI takes over responsibility for the data received.
For more information on the disclosure of data from Karolinska University Hospital check their webpage.
The Center for Health Data offers researchers a secure, uniform process for the delivery of health data. The result of data use should lead to better prevention, diagnostics and treatment.
In exceptional cases, data is not disclosed, instead a data processor agreement is drawn up that regulates what KI may do with the data received.
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
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 firstname.lastname@example.org.
Examples of tools/resources for data collection
Contact Research data office
If you have questions regarding finding register data please Contact email@example.com.
More information for logged in staff
There is more information for those of you working in the following groups
- C8.Department of Medical Epidemiology and Biostatistics