Register-based research is research based on data from records kept by government agencies or other organizations, where the data can be traced back to individuals. The registries may contain information about the entire population, or about any individual in the population who has a particular characteristic or who has experienced a particular event. In these cases the registry is a complete list. Data can then be used, for example, to complement surveys or follow a sample of individuals over time.
Sweden has a long history of national registries, which are a gold mine for research. We have an established tradition in population-based registries compiled by government agencies or other organisations, or registries that are created for research purposes. Sweden is also one of few countries with unique personal identity numbers, which make it possible to link data from different registries to a specific individual.
The Swedish Research Council has been commissioned by the government to improve the accessibility to and facilitate the use of register data for research purposes, and to assist researchers with information about registries and relevant legislation. As part of this project, the Swedish Research Council has developed the website Registerforskning.se, which is primarily aimed at researchers who wish to use register data in their research. Registerforskning.se contains information about registries, how to request data for research, and current laws and ordinances. Another part of the project is the development of the Register Utiliser Tool (RUT). RUT utilises detailed information about the available registries and variables (metadata) but no actual individual data (microdata). Using RUT, it is possible to create a record of variables that are relevant to a research question, which can make up part of the foundation for the ethical review as well as for a data request. SND collaborates with the Swedish Research Council on the metadata section of RUT, with future plans to make it possible to use RUT for searching the SND research data catalogue as well.
The Swedish National Board for Health and Welfare (Socialstyrelsen) manages the national quality registers and provides a support service for researchers, (Registerservice, Swedish only; see the English page Statistics). Register Service maintain a list over all registers, and can help you to apply for statistics or individual-based data for research purposes. They also provide support for the health care system’s quality registers if they need assistance with methods, statistics, collaborations, and completeness analyses.
The Swedish Health Care Quality Registries were mainly developed to improve health care, but are also used for research. Read more here.