SIMSAM-INFRA was a special project led by Magnus Stenbeck in collaboration with the manager of SND and the SIMSAM steering group, including the SIMSAM coordinator Anna Holmström. SIMSAM INFRA was terminated by the end of 2016, when services developed by SIMSAM INFRA were taken over by the Swedish Research Council (VR) and the Swedish National Dataservice (SND).

Project deliverables and output

  1. Provide descriptions of: the SIMSAM research data bases, data management work performed on the register data, contact persons, availability, and other additional information related to these. Links to SIMSAM member competencies related to registers and to tips on data management. SIMSAM INFRA was also the driving force behind an information brochure in English and Swedish on the importance of benefit of register-based research.
  2. Developed a web site for register data containing overarching information in Swedish and English on available register data from the central and regional/local authorities (including social, demographic, health care and biobank data sources). Initially, the entries of the Appendices of SOU 2012:36 (Registerdata för forskning), which list available register resources, should be made “clickable”, and display updated information on each data source. The site www.registerforskning.se was made public 1 October 2013. As from February 29, 2016 it is taken over by Vetenskapsrådet as their general portal into support for register based research.
  3. The project has been heavily involved in reform work with respect to the legal framework for register based research. The project contributed to the SOU 2014:45 (Unik kunskap genom register) which proposed new legislation to facilitate register based research. The project also organized the Swedish research community lobbying in order to influence the upcoming European legislation on data protection. A positive outcome was seen in the agreement reached on the European level in December 2015. The report “Registerforskning – etiken bakom juridiken” was published in August 2013.
  4. Code sharing via github.com. During 2015 and 2016, SIMSA INFRA will develop the code sharing platform “registerresearch” at github.com for the benefit of researchers willing to share their own and make use of other researcher’s statistical code. The intention is that the service will eventually be a permanent part of the Swedish National Dataservice (SND).

Project participants
Magnus Stenbeck:   Project manager, Dept. of Clinical Neuroscience, Insurance medicine, KI.
Anna Holmström:     SIMSAM network coordinator, 
                                       Dept. of Molecular Medicine and Surgery, UGIR, KI.
                                       Mainly involved in project priorities A and B. January 2012 – May 2014.
Joanna Forsberg:    Centre for Research Ethics and Bioethics, Uppsala University,
                                       Project priority C. October 2012 – October 2013

Elisabeth Strandhagen: Swedish National Dataservice. 2015 – 2016. Project priority D.