Register based research

Register-based research is research based on data contained in records kept by government agencies or other organizations, and where data can be traced to individuals. The registries may contain information about the entire population or anyone 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 up a sample of individuals over time.

Sweden has a longstanding tradition of national registries, which are a goldmine for research. As a result, Swedish research within social science and medicine is considered outstanding.

The Swedish research council (VR) has been commissioned to improve the availability and facilitate the use of register data for research purposes, and to assist researchers with information about registries and relevant legislation. The project is called "Infrastructure for register based research".

The Swedish Research Council (VR) has been commissioned to improve the availability and facilitate the use of register data for research purposes, and to assist researchers with information about registries and relevant legislation. The project is called “Infrastructure for register-based research”. This will include the development of an existing information portal, Register data for research originally created as part of the VR financed initiative “Swedish Initiative for Research on Microdata in the Social and Medical Sciences” SIMSAM. The portal, hosted by VR, is for researchers interested in population-based register data. It contains general information about registers and biobanks available at central authorities, agencies and research infrastructures, as well as links to the data owner’s information systems. It will also provide general information on legislation and practical information on how to access data.

To help and support researchers doing register-based research, SIMSAM and SND have started a community to exchange practical experiences and to share and develop the code related to register-based research, mainly in Swedish population-based registries. The service contains no personal information, but aims to share code relevant to all data available for research purposes.

This is a short film about the benefits of register-based research and the opportunities it provides:

The Swedish National Board for Health and Welfare (Socialstyrelsen) provides a support service (Registerservice, Swedish only) for researchers and also the national quality registries. The Swedish Health Care Quality Registries were mainly developed to improve health care, but are also used for research. Read more here.