Nordic Biobank Registers
Project Leader: Mads Melbye
PostDoc: Xueping Liu
We will focus on the existing and fully working Danish Biobank Register system. This system (www.biobanks.dk), available online since 2012, supports the register based health related research with a very flexible and quick search functionality to view biological materials stored in various biobanks in Denmark, Greenland and the Genetic Biobank in the Faroe Islands. The Biobank Register e.g. integrates data from the Danish Patient Registry (including Danish Cancer Registry), Danish Pathology Registry, and the Danish Civil Registration Registry and automatically matches it with the biological material from individuals, including blood, tissue and other sample types. Presently the Biobank Register allows searches among 15.5 million samples, from over 5.1 million Danish individuals. The register points to a biological specimen on e.g. 568 000 persons who have been diagnosed with cancer. A large collection of genotyped samples exists here.
The Janus Serum Bank is a population-based biobank reserved for cancer research. The specimens are collected during the period from 1972-2004 and are stored at – 25° Celsius. The sam ples originate from 317 000 persons in Norway who have participated in health studies and also from blood donors in and around Oslo. Today, samples are only collected from earlier donors in the Janus Serum Bank who have developed cancer. The Bank is internationally unique regarding size and number of cancer cases. Annual linkage to the Cancer Registry shows that 61 000 donors are diagnosed with cancer as of December 31, 2011.
HUNT Biobank is the biobank for the comprehensive and longitudinal HUNT study as well as a national biobank for Cohorts of Norway (CONOR) with DNA samples from 250.000 participants from the large Norwegian Health Surveys gathered at one physical site. In total more than 107 000 unique participants have contributed with bio samples,; many with multiple samples from different time points stored in the biobank. In total approx. 8000 HUNT participants and 15 000 participants from the CONOR studies have developed cancer as of 2010, respectively. .
In HUNT, an interactive single-nucleotide polymorphism (SNP) database has recently been established where researchers can look for specific SNPs available across different genotype efforts based on sample collections (studies) at the HUNT biobank. This is a solution that dynamically connects all aspects of genotype data including study characteristics, genotype technologies, and minor allele frequencies of relevant SNPs.
The existing systems on which we would like to focus are the Danish Biobank Register (http://www.nationalbiobank.dk/) the HUNT Study (http://www.ntnu.edu/hunt), the Norwegian Cancer Registry (http://www.kreftregisteret.no/en/) and Janus Biobank (http://www.kreftregisteret.no/en/research/Janus-Serum-Bank/). However, during the study period we will seek to also start including other Nordic biobanks in the programme.