Establishment of a Register Data Board and additional developments relevant for Swedish register-based research

– The Swedish Research Council (VR) has been instructed by the Government to improve access to and facilitate the use of register data for research, says acting Director General Sven Stafström. To do this, we have initiated the project "Infrastructure for Register-based Research" led by Maria Nilsson. Establishment of a Register Data Board is part of the work of the project, other parts concerns continuing the development of the web site www.registerforskning.se and we will build a support function to assist researchers with information about the various registers and relevant legislation.

Link to additional information in Swedish at the VR web page.

Link to members of the Register Data Board. The mandate of the board concerns matters related to research based on register data including biological data from biobanks and quality registers.

Together with the largest data owners Statistics Sweden (SCB) and the National Board of Health and Welfare (SoS) VR are investingating how scientists' need for quicker and more efficient access to data can be met. The aim is to identify a technical and administrative solution for connecting data from different authorities. The project also investigates future solutions for connecting authority data with researchers' own data. Archiving and principles for this will become an important issue, which will probably lead to a relaunch of the web site www.registerforskning.se.

A third part of the project is to build an information, advice and training function for register-based research. Work is already ongoing in various independent projects and networks both at national and Nordic level. Currently the format and mode of operation of the support function is unclear.