Abstract
Biobank research may lead to an improved understanding of disease etiology and advance personalized medicine. Denmark (population ~5.9 million) provides a unique setting for population-based health research. The country is a rich source of biobanks and the universal, tax-funded healthcare system delivers routinely collected data to numerous registries and databases. By virtue of the civil registration number (assigned uniquely to all Danish citizens), biological specimens stored in biobanks can be combined with clinical and demographic data from these population-based health registries and databases. In this review, we aim to provide an understanding of advantages and possibilities of biobank research in Denmark. As knowledge about the Danish setting is needed to grasp the full potential, we first introduce the Danish healthcare system, the Civil Registration System, the population-based registries, and the interface with biobanks. We then describe the biobank infrastructures, comprising the Danish National Biobank Initiative, the Bio- and Genome Bank Denmark, and the Danish National Genome Center. Further, we briefly provide an overview of fourteen selected biobanks, including: The Danish Newborn Screening Biobank; The Danish National Birth Cohort; The Danish Twin Registry Biobank; Diet, Cancer and Health; Diet, Cancer and Health – Next generations; Danish Centre for Strategic Research in Type 2 Diabetes; Vejle Diabetes Biobank; The Copenhagen Hospital Biobank; The Copenhagen City Heart Study; The Copenhagen General Population Study; The Danish Cancer Biobank; The Danish Rheumatological Biobank; The Danish Blood Donor Study; and The Danish Pathology Databank. Last, we inform on practical aspects, such as data access, and discuss future implications.
Originalsprog | Engelsk |
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Tidsskrift | Clinical Epidemiology |
Vol/bind | 15 |
Sider (fra-til) | 213-239 |
Antal sider | 27 |
ISSN | 1179-1349 |
DOI | |
Status | Udgivet - 2023 |
Bibliografisk note
Funding Information:secondary data and is partly funded by Novartis. LSS reports The Department Clinical Epidemiology is involved in studies with funding from various companies as research grants to and administered by Aarhus University. None of these studies are related to the current study. The authors report no other conflicts of interest in this work.
Funding Information:
In 2019, the Danish National Genome Center (an agency under the Ministry of Health) was launched as a part of the national strategy for personalized medicine.40 The goal of the National Genome Center is to advance personalized medicine by performing genome sequencing in patients for clinical and research purposes. The center has national responsibility for processing, analysis, and secure storage of genome data. As well, the center offers guidance in interpretation of data. During the next four years, the plan is to perform whole-genome sequencing in 60,000 selected patients with financial support from the Novo Nordisk Foundation. Currently, 2166 patients have had such sequencing performed. Furthermore, some patients have genetic analyses performed for diagnostic or treatment purposes as part of routine clinical care. Since 2019, it has been mandatory for clinicians to report these analyses to the Danish National Genome Center. Approximately 1940 genomes have been reported to the center in this manner. Before genetic analysis, the responsible clinicians must ensure informed consent.
Publisher Copyright:
© 2023 Laugesen et al. This work is published and licensed by Dove Medical Press Limited.