Langtidslagring av data | FoU-håndbok - Ansatt

Long-term storage of data

Long-term storage of data

In some cases it may be appropriate to save the data after project completion. This could be anonymised or de-identified data.

Since anonymising data is considered equal as deletion, no special approval is required for this kind of storage, and there is therefore no time limit. Some sources of funding (EU) require anonymous data sets to be archived in such a way that they are available to other researchers.

  • Long-term storage

    Personal data should neither be stored unnecessarily nor longer than what implied by purpose and consent.

    Storage of material for which the scrambling key has not been deleted (considered personal data) may be allowed for scientific purposes, if the benefits of storing the information clearly exceed the disadvantages it may cause for the research participants.

    The prior approval of REK/NSD will state that the research data may be stored in connection with the research to be performed. The approval from REK/NSD is based on the project description and will therefore normally specify how long the information can be retained.

    In some cases one might be a obliged to store the research data for the purposes of post-control and supervision. REK may decide that documents necessary for the post-control of the project should be retained for five years after the final report has been sent (Health Research Act, section 38).

    It may also be desirable to archive the research data in a personally identifiable form in order to have the opportunity to conduct follow-up studies or to investigate related research questions based on the same data assortment and basis. This must be approved by NSD/REK.

    If you wish to use the data for purposes other than research, such as teaching, you must submit an application to the Data Inspectorate.

    If the processing of personal data requires consent and the data is to be stored for longer than what the original consent entitles...

  • Archiving data sets

    Before selecting a storage service, check the requirements set by the funding sources.  

    The links below provide some information about relevant databases:

  • Social science data

    • CESSDA (Consortium of European Social Science Data Archives) (cessda.eu) is a joint European archive containing data sets such as election studies, language habits, divorce figures, polls and consumer behavior.
    • IFDO (ifdo.org) - International Federation of Data Organizations for the Social Science
    • ICPSR (icpsr.umich.edu) - Inter-university Consortium for Political and Social Research
    • ISSP (issp.org) - International Social Survey Programme
    • DDI Allianse (ddialliance.org) - Data Documentation Initiative
  • Long-term storage of biotechnology 

    The joint European research infrastructure ELIXIR (elixir-europe.org) is suitable for storing, analysing and sharing data. Modern bioscience research generates huge amounts of data.

    The research infrastructure primarily consists of data resources, i.e. data from research groups across Europe collected and stored on one platform and made available to life sciences environments across Europe. The infrastructure can also be used by the bio industry, public sector and scientists from life sciences, environmental and medical research.

    Recycling the same data means that you can extract added value from the research data, thereby increasing the yield of Europe's total investment in life science. In addition, the infrastructure consists of ICT tools for searching, analysing and linking data. A third component of this research infrastructure consists of giving researchers training in bioinformatic analyses and in using the ICT tool developed for bioinformatics.

    The Norwegian node of Elixir is an infrastructure project supported by NFR - called ELIXIR.NO. You will find more information about the service at the Norwegian activity on the website of the Norwegian Bioinformatics Platform.

    They also offer data storage services for single users. These sign an agreement with ELIXIR.NO - so far this is done at the research level, not at the institution level.

    You will also find information in an article they have published in NBSnytt.

    Biobank Norway (bbmri.no) should be a national and highly competent infrastructure within health research.

Contact

Contact