In order to request register data for your research, you need to contact the register holder responsible for the register containing the data you need. Different register holders disclose data in different ways; you must therefore contact each register holder for more detailed information on how to proceed.
Some register holders have a specific contact point for requesting data, while others do not have a central access point. The data you request must be necessary for and relevant to the research purpose, and no more data than necessary shall be processed. This means that:
- in general, you must have ethical clearance before you can request data
- you should only request the register data required to answer the research question
There are several regulations that govern how register data may be processed for research purposes and when you as a researcher can obtain data from a register holder.
REGISTER UTILISER TOOL – RUT
The Swedish Research Council is developing a new tool for searching and analysing metadata (data about data) in registers used in register-based research. The Register Utiliser Tool (RUT) contains metadata about both registers and input variables.
The RUT metadata tool will enable better and more accurate support for requesting data for research purposes from register holders. The version of the tool currently available is a trial version in Swedish with limited functionality and only a small number of registers.
Cost
As a rule, the register holder charges a fee for handling a request for data. In the case of the National Board of Health and Welfare, for example, it is an hourly charge for working hours spent on administration, confidentiality assessment and data collection.
