OPEN's biobank in the National Biobankregister

It has now been made possible for all biobanks in OPEN to become searchable via the Danish Biobank Register. OPEN has decided, that all biobanks should be visualised in this way, unless the project responsible researcher do not wish for this to occur.  OPEN has been working on this visualisation for a longer period of time, but the process of doing so has changed a little. As licensee on a biobank project in OPEN it is therefore important that you read the information below.

How does it work?

The Danish Biobank Register: www.biobanks.dk aims, as do OPEN, to promote research and the use of existing biobanks. The register provides an overview of the number and types of biological samples linked with demographic data and diagnoses from birth to death taken from The Danish National Patient Register. To make OPEN’s biobanks searchable in The Danish Biobank Register, OPEN must inform the register of the social security numbers of the individuals and the type and number of biological samples. This extraction of data is made by OPEN’s data managers and sent to The Danish Biobank Register, who then links the data OPEN provides with data from the Danish National Patient Registry. When searching in The Danish Biobank Register, OPEN’s biobanks will appear as one. If a researcher, after searching in the registry, contacts OPEN, either directly or through The Danish Biobank Registry, with the intention to access the biological samples, the data behind the search will tell us whether it regards a small amount of samples from a variety of biobanks at OPEN or a larger amount of samples from a single biobank or two. You are able to set a lower limit for the number of samples you want inquiries about. OPEN will disseminate relevant interest/inquiries to the licensee, who then decides whether there is interest in initiating a research collaboration. A collaboration with the supply of samples will require separate regulatory approvals. 

What should I do?

You do not have to do anything, OPEN takes care of the whole process in regards to collaborating with the Danish Biobank Register

Your project is approved by the Danish Data Protection Agency under the collective permission of the Region of Southern Denmark, as is OPEN’s handling and storage of the data connected with your biobank.  OPEN and the Danish Biobank Register sign a data handling agreement.