When an entire country is a cohort

Over the years, the Danish society has invested in building a range of national registers containing information about all residents in Denmark. Similarly, the Danish healthcare system has routinely collected biological material from a large number of individuals. Denmark has many national biobanks that collect and store biological material from patients, suitable for present and future research projects. The aim is to create one point of entry (overview) for possible use of biological material in Denmark for research purposes - making access secure and easy. Importantly, all data from the biobanks can be linked to disease codes and demographic information from national administrative registers on an individual level.

Biological samples from cradle to grave

With biological samples from cradle to grave, the researchers are able to do a lifespan study for an individual, by linking the samples to the Danish registries. The researchers are able to gain insight into birth and family circumstances, vaccinations, medication, diagnosis and in the end, cause of death if relevant for the research study. It may be possible to find a disease incidence, with use of the samples and knowledge of biomarkers, prior to the actual manifestation.

The Danish National Biobank

The Danish National Biobank stores more than 12 million biological samples that can be used for research projects. The biobank is based on the samples submitted to Statens Serum Institut, in the form of project samples either from various external or internal research projects or in the form of routine tests (performed as part of national screening programmes). This means that data about the donors and screening results are often available. Furthermore, via the Danish Biobank Register, information such as donor age, gender, diagnosis, operation procedures etc. can be linked to the samples.

The material at the Danish National Biobank currently comprises more than 10 million samples of different kinds and the number is increasing continuously. These samples also include COVID-19 samples. To get an overview of the different types of samples available in the Danish National Biobank, please use the search engine at this webpage: Danish National Biobank (biobanks.dk).

Furthermore, Denmark has many pathological biobanks that collect and store biological material from patients, which is suitable for present and future research projects. Some examples are presented below.

Bio- and Genome Bank Denmark

Bio- and Genome Bank Denmark (RBGB) stores biological samples (blood, tissue, urine etc.) in biobank centres and in local departments at the hospitals in Denmark. The RBGB secretary has the National overview of all samples where the biobank centres are responsible for registration, handling and storage of samples taken in one of the five regions in Denmark. Metadata connected with the samples are registered together with management of samples. Metadata may be diagnostic code, age, verification as all tissue samples are verified by a pathologist. The infrastructure is a part of routine and registration systems linked to the Danish Pathology databank. Samples collection and metadata are presented yearly to ensure high quality samples optimal for diagnostic and research purposes. The infrastructure is organised in this manner to secure the collections of samples and data and to benefit from economics of scale. The infrastructure is extended by new biobanks as the relevance for patient and precision medicine is growing.

Joint standards and procedures when collected

RBGB consists of several national biobanks within different therapeutic areas and new areas are continuously being added. For example, in 2020, a new COVID-19 biobank was included in RBGB. In fact, this new biobank was established in only five days showing how well the national infrastructure of RBGB is established. Today, RBGB includes Danish Cancer Biobank, Danish Rheumatologic Biobank, Danish Diabetes Biobank, Danish Genetic Biobank, Danish Covid-19 Biobank and Danish Blood Donor Biobank, and more biobanks are in the pipeline including the new Danish Screening Biobank. To get an updated overview of all biobanks at RBGB, please visit this webpage: Regionernes Bio- og GenomBank

All samples in RBGB are high quality biological material and are obtained with the acceptances to be used for research purposes from the patients. One among several of the important ambitions for RBGB is to ensure that Denmark is an appealing partner within health research. RBGB can facilitate one shared entrance for hospitals that ensures access to high quality biological material. Researchers thus have easier access to biological material at the same time as the material is collected and registered according to joint standards and procedures to support the quality of research.

How to access

Access to the samples from both The National Biobank and RBGB for foreign companies needs to go through a non-profit Danish researcher. The Danish researcher has access to samples after approval from The Danish National Committee on Health Research Ethics (and sometimes other agencies) and will become data controller. The data controller is securing that everything is handled correctly according to Danish law and that all sensitive data stays in Denmark.

The Danish National Genome Centre

The purpose of the Danish National Genome Centre is to support the continued development of personalised medicine to the benefit of patients in collaboration with the entire Danish healthcare system, research institutions, patient associations, etc. The Centre was established in 2019, and in the short term, it will develop and operate a joint, national infrastructure to ensure that doctors throughout the country have access to whole genome sequencing and storage of information in a National Genome Database. The purpose with the whole genome sequencing is to use them directly for patient care and the goal is to have at least 60,000 Danish patients sequenced in 2024. The Danish National Genome Centre will also develop a national research infrastructure for personalised medicine.

Over time, the National Genome Database will constitute a significant research resource that can contribute to the further development of personalised medicine in Denmark.

The aim is to build a genome database; both from the 60,000 whole genome sequenced patients as well as from the mandatory reporting of genetic analysis from the Danish University Hospitals and research. The data is available through a private data cloud for researchers from certified research institutions. Like for the Danish Biobanks, access can be obtained for companies under the same conditions as for accessing the biobank material.

More info on the Danish Bio- and Databanks

This article is based on a webinar on Danish bio- and databanks and personalised medicine hosted by Invest in Denmark (a part of The Danish Ministry of Foreign Affairs) and the Danish Association of the Pharmaceutical Industry in spring 2021.
Watch the entire webinar on-demand or download speaker presentations:
When an entire country is a cohort - Unique biobanks supporting personalized medicine

The webinar was the second episode out of a four part webinar series on personalised medicine – from basic research to post-marketing activities. Each episode provided an overview of the Danish research infrastructure within a specific phase of the drug development process.

Watch the entire webinar series on-demand or download speaker presentations:
Webinar series on personalized medicine in Denmark

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