Overview of Biobanks in Sweden
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”).
Biobank Sweden is a collaboration between healthcare, academia, industry and patient organizations in Sweden. 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.
Biobank Sweden has developed common principles and agreements for access to samples for research. Information, agreements for access to samples as well as contact information to biobanks can be found on their website. Biobank Sweden is a national node in the European research infrastructure for biobanking BBMRI ERIC.
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.
Access to biobanks in Sweden
The "Registers and Biobanks in Transition” strategic initiative is funded by EIT Health