Registries of interest for research can be divided into public governing registers, quality registers in healthcare, biobanks and research generated data.
The Swedish Research Council provides researchers with information on existing registers, as well as support during the process of register based research. They are currently developing a tool, RUT (Register Utiliser Tool), that will enable efficient searching and matching of information on metadata in registers. For more information visit www.registerforskning.se
National governing registers
National governing registers of great interest for research are population, socioeconomic and health data registers, as well as population based surveys and studies.
The following authorities operate registers:
Swedish Social Insurance Agency (Försäkringskassan) (only in Swedish)
The rules of the Public Access to Information and Security Act determine whether register data can be released. Each authority takes an independent decision to release data for which they are responsible.
There are registers created within specific research projects, so-called research generated registers. There are also large research databases, which can be considered a kind of infrastructure. The purpose is to serve several research projects, sometimes even within different scientific disciplines. From an international perspective, Swedish cohorts are very useful as outcome events can be obtained from public registers, such as the Prescribed Drugs Register, the In-Patient Register, the Swedish Cancer Registry and the Cause of Death Register, whereby a complete follow-up of all individuals can be obtained. The same principles as for samples collected for research purposes usually apply for access to these data.
Information about some of these registers is available at the:
Swedish National Data Service (www.snd.se).
Information about several larger cohorts is also available at:
Swedish Cohort Consortium (www.cohorts.se)
National Quality Registers
There are 108 National Quality Registers operating under the healthcare system. These registers have been established in specific areas to systematically and continuously develop and ensure the quality of Healthcare as well as used for continous improvement of healthcare and for research. The quality registers contain personal data regarding healthcare, such as diagnosis, treatment, and results of treatment.
The registers differ in quantity and setup and therefore differ in suitability for research.
For more information visit kvalitetsregister.se.