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.
For more information about this, see archiving data sets.
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...
- you must obtain a new consent from the participants or
- you may apply for dispensation for further storage without consent
Before selecting a storage service, check the requirements set by the funding sources.
- Remember that the NFR sets conditions regarding access to research results for its projects. Follow the conditions NFR has set regarding access to research data.
- NFR-funded projects must be stored at NSD. For projects within social sciences, humanities, medicine and health and environment and development research, the project manager is required to transfer a copy of all research-generated data/result data and all necessary documentation for the reuse of data (metadata) to NSD for archiving, see also NFR's website about project reporting and the Magazine Forskning.
The links below provide some information about relevant databases:
- NSD (Norwegian Center for Research Data AS) offers well-suited solutions for researchers and institutions who wish to long-term store different types of research data, see NSD's website about archiving (anonymous and de-identified data).
- NorStore. Available for all research activities at - or in collaboration with researchers in - the university and college sector. Assigned upon application.
- Service for sensitive data (TSD 2.0). Contact R&D at the ICT department (anonymised and de-identified).
CESSDA (Consortium of European Social Science Data Archives) is a joint European archive containing data sets such as election studies, language habits, divorce figures, polls and consumer behavior.
IFDO - International Federation of Data Organizations for the Social Science
ICPSR - Inter-university Consortium for Political and Social Reserach
ISSP - International Social Survey Programme
DDI Allianse - Data Documentation Initiative
The joint European research infrastructure ELIXIR 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 should be a national and highly competent infrastructure within health research.