Overview of biobanks
Read detailed Fact sheets about the 16 biobanks affiliated to EIT Health Scandinavia’s Partners.Learn more
Biobanks by country:
There are many biobanks in Denmark, but no comprehensive overview. The best overview is provided by the Danish Biobank Register, run by the Danish National Biobank. Here Danish biobanks are invited to participate in the national overview. It is free for the biobanks, but not mandatory. The website contains an overview of the relevant biological samples, and provides links to registers, cross reference samples to specific disease categories, operations, procedures etc. The Danish Biobank Register currently contains information on 25.3 million biological samples from 5.7 million individuals.
To obtain biological samples an approval from a research ethics committee (there are five regional committees and one national committee which deals with larger projects) and the Data Inspection Agency is required. An application is then made to the biobank of interest, who then evaluates the project. In some cases a local collaborator is required to obtain samples.
In the majority of case a Danish non-profit collaborator is required to obtain samples. In general private companies cannot gain access to Danish PIN numbers (CPR numbers) and thereby potentially identify individuals. Non-profit researchers can get access to PIN numbers, if they have a valid reason (such as linkage to e.g. clinical information or other register information).
The Danish National Biobank offers to act as liaison partner in projects where samples are not stored in the Danish National Biobank, but in other biobanks throughout Denmark. It is not a requirement, but an offer to researchers.
There are several minor sample collections, but only one real biobank in Estonia, The Estonian Biobank, which was founded in 2000 as a population-based biobank. It was political decision to have one national biobank and this was regulated by the Human Genes Research Act in year 2000. Now, 19 years later, the biobank includes a collection of health and genetics data of 200 000 people, approximately 20% of the adult population of the country. The whole cohort of 200 000 is genotyped with Illumina GSA array (currently 152 000). The Human Genes Research Act allows regular updating of data through linkage to national registries enabling long-term follow-up of the cohort, and to re-contact the gene donors in the biobank. A nationwide technical infrastructure (X-road) for the secure electronic exchange of medical data has also been established and is maintained by the state. This allows creating the disease trajectories on all gene donors from the birth in the Estonian Biobank, where all contacts with the medical systems including ICD-10 diagnoses, prescriptions, lab data and EMR are included. Recently the deep sequencing of the whole genomes of 3,000 individuals has been completed, in addition to 2500 whole exomes.
It is used as the population based reference for imputing. Several pilot projects are being conducted in order to work out the best ways to return the heath related research data e.g. polygenetic risks scores (PRS) back to people in the biobank who are asking for it. For that purpose, decision support tools have been developed for several major diseases, including breast cancer and pharmacogenomics based drug response. Over 2000 people from the Estonian Biobank have received genetics based data up to now, and the feedback is very positive based on questionnaire data before, right after, and 6 months after the counselling. During the first contact with the genetic counsel and/or medical geneticist the report is explained. The pilot program on personalised medicine using PRS on CAD and breast cancer is ongoing in the two largest hospital in Estonia. All this will be transferred to the medical system in next few years. The outcome being that personalised medicine as 4P medicine (personal, predictive, preventive and participatory) has been achieved to the point of no return.
There are about 450 registered biobanks In Sweden. Approximately 200 of these are found in Healthcare regions (County Councils). It is also where the largest sample amounts are found, about 90% of all saved samples in Sweden. The Healthcare regions biobanks has over 150 million samples and approximately 3-4 million samples are added each year. The samples are collected for healthcare purposes but can be available for research. There are about 55-60 biobanks that have the state as principal, which applies to biobanks at universities, colleges and authorities. Samples collected for research are often, but not always, stored in a healthcare biobank in collaboration with a University Hospital. 200 biobanks are private, the principal are often private healthcare providers and medical companies/clinical research organizations.
There are several large research collections and cohorts in Sweden which are collected by researchers or research groups. These samples can be made available to other research groups and companies that have not participated in the collection of the samples, after new decisions from the ethical review authority and after application to biobank custodian. Applicants also must obtain permission from the group or committee granting access to the respective samples.
Information and help to find existing research sample collections and larger cohorts is available by the following:
- https://biobanksverige.se/forskning/befintliga-kohorter/ (in Swedish)
Download an overview of biobanks in Sweden and how samples can be used in research/clinical trials >
Biobank Sweden is a well-established collaboration organisation for regions and universities with a medical faculty on biobank issues. Biobank Sweden also includes representatives from industry organisations from both the business sector and patient organisations.
In their website there is information, links, agreements for access to samples as well as the biobanks contact information:
- https://biobanksverige.se/ (detailed information in Swedish)
- https://biobanksverige.se/research/ (summary in English)
More than 150 million samples are stored in biobanks at in Healthcare regions (County Councils) and approximately 3-4 million samples are added each year. Around 90% of all stored samples are managed within the county councils/regions, and data is mainly used for healthcare and research. About 95% of all stored samples are collected and stored for healthcare purposes and 5% are stored for research.
Sweden has a uniform healthcare system consisting of 21 county councils/regions, where 7 have university hospitals (university county councils/ regions). Through agreements, there are established collaborations between the 7 university hospitals and the 7 academic universities with a medical faculty. In 7 the healthcare sector, a well-established infrastructure for the handling of samples and information, as well as biobanking for care, has long been established. When the same infrastructure is used for research, it is cost-effective, patient safe, quality assured, and in accordance with the regulations covering the healthcare sector. This provides increased accessibility across the country. This enables universities and the healthcare sector to collaborate on biobanking of research samples, which means that samples for research often, but not always, are stored in the county councils/regions biobanks within a university hospital.
The latter also applies to the 14 county councils/regions that do not have a university hospital. Sweden’s 21 county councils/regions are divided into six healthcare regions within which there is extended collaboration and joint functions, such as the Regional Biobank Centre (RBC Swedish “Regionalt biobankscentrum”).
County councils/regions with university hospitals and universities with a medical faculty have an agreement for enhanced collaboration to support biobank infrastructure for healthcare, academia and industry (medical/technical/pharmaceutical). To implement the agreement, the association “Biobank Sweden” was established (former National Biobank Council and BBMRI.se).
The agreement originates from the county councils/regions responsibility for healthcare, and the universities responsibility for research and education, as well as the universities need to collaborate with healthcare in order to fulfil their responsibilities. The goal of the extended collaboration is to build a joint, improved and sustainable national biobank infrastructure for healthcare, academia and industry, with the best conditions for both national and international collaboration. The enhanced collaboration aims at producing science based on biobank samples for the benefit of public health and the individual patient.
Biobank Sweden also aims to facilitate the enforcement of the Swedish Biobanks in Medical Care Act. The industry organisations: Läkemedelsindustriföreningen (LIF), Swedish Medtech, Swedish Labtech and SwedenBIO also joined the main agreement with the purpose of increasing the competitiveness of Swedish medical research and development, and with the aim to promote the development of healthcare. A good collaboration between industry, healthcare and universities promotes coordination of resources made available through the existing collaboration between biobanks, on both a national and local level, as well as within the healthcare regions.
Biobank Sweden consists of a National Steering Committee, with representatives appointed by the county councils/regions, universities with a medical faculty, and with representation from industry organisations, a strategic preparatory group, two working committees for regulatory and operative biobank service, and a national network with the county councils’/regions’ biobank coordinators (Swedish: “Biobankssamordnare”). In Biobank Sweden, which is supported by the Swedish Association of Local Authorities and Regions, representatives from patient organisations are also included. Biobank Sweden is a national node in the European research infrastructure for biobanking BBMRI-ERIC.
A document has been put together with the objective to facilitate access to samples for research and clinical trials in Sweden. The document provides guidance on what researchers and companies should do to get access to existing samples in Swedish biobanks. It also provides guidelines for researchers and companies regarding biobank services available for the collection of new samples, and the release of samples.
Different types of sample collections for research
Sample collections saved for healthcare purposes
The largest sample collections consist of samples collected in the healthcare sector for care, diagnostics and treatment. In order to gain access to samples in any of these sample collections, an approved biobank application, and an approved ethical vetting and consent from the donor in accordance of the approval from an Ethics Review Board, are required.
To obtain information or apply for access to healthcare samples, contact the Regions’ biobank coordinator here.
Research sample collections and cohorts
In Sweden there are several large sample collections and cohorts that specific researchers or research groups have completely or partially collected. These sample collections can be based on geographical areas, or specific age groups and/or diseases or conditions. In some of the sample collections, persons or patients are monitored over time, which is of great value since it enables detection of risk factors or disease markers. Consent from patient/donor is collected during sampling. An approval from an Ethics Review Board is also required for the samples to be used for research. Samples may also be available for research groups and companies that have not been part of the collection of the samples. In order to gain access to samples that are part of research collections, approved ethical vetting and obtained consent are required in addition to the biobank application, and the applicant also has to obtain permission from the group or committee granting access to the respective samples. The Ethics Review Board will also decide if new consent from the research participant is required before an existing sample can be used in the specified research project.
National Sample Collection Register
BBMRI.se Sample Collection Register, is a national catalog containing information on a meta-level about certain research sample collections in Sweden and the Nordics. Here you can find already collected biobanks material that may be used by anyone other than the researcher responsible for collecting the material. The catalog is based on metadata such as diagnosis, sample type, phenotype and survey data, and aims to stimulate networking among researchers for better use of existing biobank sample collections, and to increase opportunities for collaborative research.
The catalog is managed by KI Biobank and covers 114 sample collections from approximately 1.4 million donors.
In Sweden there are several large cohorts that have been collected by researchers or research groups. These can be based on geographical areas, specific age groups and / or disease.
For access to samples from existing cohorts, follow the link below to their website for information about how to apply for data and/or samples. Biobank coordinators (Swedish “Biobankssamordnare”) or biobanks with operative services can also provide guidance on existing cohorts (contact information can be found at www.biobanksverige.se)