Overview of health data registers in Sweden

There are more than 100 national health data registers – so called “quality registers” – in Sweden. They have been established within specific areas of the healthcare system in order to develop and ensure the quality of care in a systematic and continuous way. The registers contain personal data on healthcare in specific areas (examples of data are diagnosis, treatment, and treatment outcome). Today, the registers are used to improve and follow up healthcare outcomes as well as research.

Swedish National Quality Registers have been built up by dedicated healthcare professionals with the aim of monitoring the outcome of the healthcare given to patients and generating valuable knowledge to improve healthcare outcomes as well as research. The health data registers are therefore quite different in terms of size, coverage and data quality.

Information about research on data from the National Quality Register can be found on:

Registry Centre Organizations

Registry Centre organisations support national quality registers. In each healthcare region there is one Registry Center that manage several National Quality Registers in several different areas and diagnoses. Quality registers within cancer are managed by the Regional Cancer Centre (RCC).

National government registers

National government registers are population and socio-economic registers, health data registers and population-based survey and interview surveys. Most of these registers are available from Statistics Sweden (SCB), and the National Board of Health and Welfare.

EIT Health connected health data registers in Sweden

Region Stockholm

Region Stockholm will establish a Center for Health Data in October 2019. The center for health data shall be a function where Region Stockholm handles assessment of data secerecy and release of data to researchers. It will be a service organisation for all healthcare providers in the Stockholm region – both public and private.

Researchers from academia and industry will be able to apply for access to health data from all healthcare providers in the region of Stockholm for research purposes by turning to one health data center. Each individual healthcare provider will take an independent decision to release data that they are responsible for. The Center for Health Data will not have its own database, but will collect, process and disclose data for purposes that are permitted under current legislation. The Center for Health Data shall, in addition to be a center for the provision of data, and also gather expertise and knowledge of applicable laws and ethics.

National quality registers
There are more than 100 national quality registers in Sweden they have been created within specific areas of the healthcare system in order to develop and ensure the quality of care in a systematic and continuous way. The registers contain personal data on healthcare in specific areas (examples of data are diagnosis, treatment, and treatment outcome). Today, the registers are used to improve and follow up healthcare outcomes as well as research.

Information about research on data from National Quality Registers can be found on:
http://www.kvalitetsregister.se/englishpages/useregistrydatainyourresearch/quickguideforresearchers.2409.html and https://www.registerforskning.se/en/

Registerforskning.se is operated by the Swedish Research Council and provides researchers with information on existing registers, as well as support during the process of register-based research. They are developing a tool called RUT (Register Utiliser Tool) that will enable efficient searching and matching of information on metadata in registers.

Nationella kvalitetsregister
The website has been developed by the office for National Quality Registers within the Swedish Association of Local Authorities and Regions (SKL). The registers may vary in size and are differently established, therefore are differently suited for research purposes. An early contact with the register holder, or another representative of the registry’s steering group, is therefore recommended. The following links provide information about all National quality registers, contact information, name of the registry holder, information about certification levels, and often a link to a webpage: http://www.kvalitetsregister.se/englishpages/findaregistry.2027.html
http://kvalitetsregister.se/englishpages/findaregistry/allswedishqualityregistries.2028.html

Registry Centre Organisations

Registry Centre organisations support national quality registers.
In each healthcare region there is one Registry Center that manage several National Quality Registers in several different areas and diagnoses. Quality registers within cancer are managed by the Regional Cancer Centre (RCC).

Registercentrum Norr, RCN
http://www.registercentrumnorr.vll.se
Registers managed by Registercentrum Norr – http://www.registercentrumnorr.vll.se/hem/anslutna-register

The register center organisation for the Uppsala-Örebro Healthcare Region consists of Uppsala Clinical Research Center, UCR, and RCC Uppsala-Örebro

Uppsala Clinical Research Center, UCR
https://www.ucr.uu.se/sv/
https://www.ucr.uu.se/en/services/quality-registry-center (eng)
Registers managed by UCR – https://www.ucr.uu.se/en/services/quality-registry-center/national-quality-registries (eng)

QRC Stockholm
https://qrcstockholm.se/
https://qrcstockholm.se/about-us/ (eng)
Registers managed by QRC Stockholm – https://qrcstockholm.se/register/anslutna-register/

Registercentrum Västra Götaland
https://registercentrum.se/
https://registercentrum.se/in-english/centre-of-registers-vaestra-goetaland/p/H1nJ_MX3z (eng)
Registers managed by Registercentrum Västra Götaland – https://registercentrum.se/laenkar-till-register/kvalitetsregister-anslutna-till-registercentrum-vaestra-goetaland/p/rySpM3rIf

Registercentrum SydOst, RCSO
http://rcso.se/
Register managed by Registercentrum SydOst – http://rcso.se/anslutna-register/

Registercentrum Syd, RC Syd
http://rcsyd.se/
Register managed by Registercentrum syd – http://rcsyd.se/anslutna-register

Regional cancer centres (RCC)
https://www.cancercentrum.se/samverkan/
All quality registers within cancer are managed by Regional cancer centres.

National government registers

National government registers are population and socio-economic registers, health data registers and population-based survey and interview surveys. Most of these registers are available from Statistics Sweden (SCB) and the National Board of Health and Welfare.
https://www.scb.se/en/finding-statistics
https://www.socialstyrelsen.se/statistics
https://www.socialstyrelsen.se/register (in Swedish)

The "Registers and Biobanks in Transition” strategic initiative is funded by EIT Health