Register Based Research

Registers contain personal data (health data, demographic, socioeconomic etc) associated with unique identifiers that enable linkage between registers. Register holders are responsible for ensuring that the data is held securely and in accordance with GDPR and other laws. Register-based studies can be both clinical trials or non-interventional trails/studies (EMA, Guideline of register-based studies, 2020).

Registerforskning - a hub for information about register-based data

The Swedish Research Council established Registerforskning.se to support researchers in using register-based data from Sweden. The website includes information about available registers, guides the researchers in the register-based research process (identify, request, and use), and makes information about the legal requirements easily available. In most cases, the data produced in register-based research is sensitive and cannot be openly shared, though code may be shared.

Register Utiliser Tool (RUT)

The Swedish Research Council operates the Register Utiliser Tool (RUT) , which aims to facilitate the use of register-based data. It allows researchers to search and match metadata in registers from both register holding authorities and organisations. Users can search for variables or populations of interest. Most of the metadata and concepts in RUT are in Swedish. Semantic mapping to international ontologies and terminologies has been carried out in some registers connected to RUT and is ongoing in other registers. Such mapping enables machine readability and multilingualism in the languages implemented by the ontologies or terminologies. The RUT is free of charge, but a RUT account is required to use it. Only those with emails connected to a research institution, or to an authority or organisation that holds registers can get a RUT account.

Ordering register data

Note that in case of some registers information is only available in Swedish.

Subset of useful registers

The table below is an overview of a number of different national public authority registers and national quality registers. Please note that the webpages of some of the registers listed below are only available in Swedish.

Register name Register holder The Swedish Cause of Death Register National Board of Health and Welfare The National Patient Register National Board of Health and Welfare National vaccination register Public Health Agency of Sweden National Quality Registry for Paediatric Rheumatology Region Östergötland National Quality Registry for Palliative Care Region Jönköping Quality Registry for SARS-CoV-2 (COVID-19) Karolinska University Hospital National Quality Registry for Pregnancy Karolinska University Hospital National Quality Registry for Vascular Surgery Region Uppsala Registret över insatser inom kommunal hälso och sjukvård National Board of Health and Welfare The Swedish Cancer Register National Board of Health and Welfare The Swedish Intensive Care Registry Region Värmland The Swedish Medical Birth Register National Board of Health and Welfare The Swedish National Airway Register Region Västra Götaland Swedish Neonatal Quality Register Karolinska University Hospital The Swedish Prescribed Drug Register National Board of Health and Welfare Swedish Rheumatology Quality Register Karolinska University Hospital