How to use register-based research
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, e.g., information on each part of the process of identifying, requesting and using register data. We are currently developing a metadata tool called RUT (Register Utiliser Tool) that enables efficient searching and matching of metadata in registers.
Read more about RUT (in Swedish)Define & formulate
Some of the steps in the register-based research process apply to all types of research, while some concern issues that are specific to register-based research, such as request for disclosure of data by register holders.
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Formulate the research question
The formulation of the research question determines what information is needed to answer the question.
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Decide on study design and define the population
Determine the optimal approach to studying the question, as well as criteria for the study population.
The choice of study design is crucial for how well the research question can be answered. Depending on both the research field and research question, a certain study design may be more suitable than another.
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Identify data to answer the research question
Explore existing data, find and select data to answer the research question based on the chosen approach.
Research projects based on register data often use data from a number of different registers. Several register holders may need to be contacted for a clearer description of the contents of the register.
Application & disclosure
Some of the steps in the register-based research process apply to all types of research, while some concern issues that are specific to register-based research, such as request for disclosure of data by register holders.
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Apply for ethical review
Before you request and access data from one or more registers for research on living and/or deceased individuals, on human biological material, for research involving the handling of sensitive personal data, or personal data on breaches of the law involving crime, an ethical review and approval by a regional ethical review board are required.
Already at the start, you must identify and report the ethical aspects raised by the research project, as well as how they will be considered and managed in the project.
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Request data from register holder
There is currently no central access point for Swedish public authority data, so it may be necessary to contact multiple register holders to access data for research. It is important to prepare ahead by completing the earlier steps before requesting register data from a register holder.
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Disclosure and linking of data between registers
In order for data to be made available, each register holder must carry out a risk assessment.
Different register holders have different rules for risk assessment, and it is their sole decision what information can be disclosed. The register holder’s assessment is based on the regulations that each register is subject to. As a researcher, you might therefore perceive the assessment as unpredictable, but this is because the legislator may have decided that the protection of confidentiality of seemingly the same data shall vary in strictness between different registers.
The register holder who provides the data creates a so-called code key for the de-identification of register data. Please note for how long this key is retained.
Analyse & update
Some of the steps in the register-based research process apply to all types of research, while some concern issues that are specific to register-based research, such as request for disclosure of data by register holders.
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Review & analyse the data provided
Perform a systematic and critical review of the data to make sure that they meet the needs of your research question and identify potential sources of error in the data provided before you begin using the data. Pay attention to the deadline for contacting the register holders for a possible revised disclosure of data.
Process the register data you have received. Perform a statistical analysis to answer the research questions.
Register-based research projects require very good knowledge of research methodology and statistics. Therefore, people with expertise in these areas participate in a well-planned research project.
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Update the disclosed data
It is possible to receive updates of the original data material on one or more occasions. This is especially relevant for longitudinal studies, for example, when a new annual edition of a register becomes available.
However, the need for updates has to be documented and established when the data is first disclosed.
When approval from an ethical review board is required for a research project, the specific need for updating data material must be stated in the ethical review application.
Publish & finalise
Some of the steps in the register-based research process apply to all types of research, while some concern issues that are specific to register-based research, such as request for disclosure of data by register holders.
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Data management in the final stages of the project
Publish the results, archive and screen out.
When a research project ends, it is time to take care of the data material that the project has had access to, as well as the documentation and results of data processing and data management.
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Reuse experiences
Do share data, software code, as well as knowledge and experience regarding the content and quality of the register.
You must find out what can, may and must be shared, and if so how. Register data that you have used in your research can only be made available to a third party after a new risk assessment has been completed. Your organisation (research principal) is responsible for assessing the potential risks involved in accessing the data.
Metadata Tool RUT
The metadata tool RUT provides a structured overview of data in Swedish registers and biobank sample collections. In RUT, the contents of the registers are described with metadata in a standardized and detailed manner. It allows you to do advanced searches and compare variables from multiple perspectives. RUT contains, among other things, information about the meaning of variables and variable value sets, and researchers can therefore evaluate whether the variables can be used to answer a specified research question. The RUT Metadata Catalog provides a quick overview of what is available in the various registries. You can perform basic filtering and compare data collection periods at the registry level. In the catalog, you can find registries that are connected to RUT or in the process of connecting to RUT.
To RUT (in Swedish)