BIOBANK PROFILE
BIOPRESERVATION AND BIOBANKING Volume 11, Number 2, 2013 ª Mary Ann Liebert, Inc. DOI: 10.1089/bio.2013.1123
Uppsala Biobank Address correspondence to: Malin Engelmark, Ph.D. Uppsala Biobank Dag Hammarskjo¨lds va¨g 14B, 1tr MTC-huset, Science Park 751 85 Uppsala Sweden
Introduction
U
ppsala Biobank in Sweden was founded in September 2008 in a collaboration between Uppsala County Council and Uppsala University. The purpose was to become a center of competence for biobank issues and an infrastructure for medical research. Prior to the formation of the Uppsala Biobank, Sweden’s Biobanks in Medical Care Act went into effect in 2003 and spurred research and healthcare principals to register their biobanks. The main goal for these biobanks was to fulfill the legal regulations that govern human tissue samples, but also to clarify rights and responsibilities regarding samples. In Uppsala, a vast majority of the samples were collected and stored within healthcare facilities at Uppsala County Council while Uppsala University housed samples for research and publications. The principals, represented by Uppsala University hospital and Uppsala University Faculty of Medicine, decided to found a common biobank organization by initiating and investing in Uppsala Biobank. The principals believed a united organization would result in benefits gained for all sample collections—facilitating tracing, security, quality assurance, and promoting research collaborations. Uppsala Biobank today represents the only biobank of the principals and includes all sample collections for both research and healthcare. The mission of Uppsala Biobank is to administer, establish, support, and maintain a stable biobank infrastructure; obtain and supply high competence and tools to fulfill laws and regulations; and perform services in relation to sample management and processing. The head of Uppsala Biobank is the biobank custodian of all sample collections and every sample collection also has a responsible person assigned to that collection. The principals are represented in a biobank council that meets four times per year. A sample collection can be used for either healthcare or research. The director of the clinic is the responsible person for healthcare sample collections at the department; for research sample collections the responsibility goes to a specific researcher. Legally approved written contracts are signed between the biobank custodian and the responsible persons for research collections. The contract gives the sample collection responsible person sole right to use of samples for research upon completion of informed consent and ethical approval. Uppsala Biobank as a center of competence for biobanking and as a research infrastructure has so far been a success. This is an example of how research and healthcare principals with common interest in using biobank samples can collaborate in a successful manner. In January 2013 Uppsala Biobank consisted of 131 research sample collections and 6 healthcare sample collections.
E-mail: [email protected] www.uppsalabiobank.uu.se Title of Biobank: Uppsala Biobank Site Location: Uppsala Biobank, Dag Hammarskjold’s vag 14B, 1tr, MTC-huset, Science Park, SE-751 85 Uppsala Contact information: Web: http://www.uppsalabiobank.uu.se/en/ E-mail: [email protected] Contact: Anna Beskow, Director Uppsala Biobank Start date of operations: September 2008 Date range of cases: From 1930s to present Category of biobank: Basic/Translational/Epidemiological/Clinical Focus of biobank: Includes basically all human diseases represented in 131 research sample collections and 6 healthcare sample collections. In the hospital integrated biobank service, samples are collected prospectively for 8 different cancer diagnoses, myocardial infarction, psychiatric disease and several others are starting up. At the pathology department, tissue from all diagnoses where there is adequate sample available is stored fresh frozen as a resource for research. Membership of biobank: ISBER (International Society for Biological and Environmental Repositories), ESBB (European, Middle Eastern & African Society for Biopreservation & Biobanking), BBMRI (Biomolecular Resources Research Infrastructure), Swedish National Biobank Council (NBR), Swedish Regional Biobank Centre, U-CAN (Uppsala-Umea Comprehensive Cancer Consortium), EpiHealth (Epidemiology for Health) and SciLifeLab (Science for Life Laboratory). Major source of funding for biobank: Funding from Uppsala County Council and Uppsala University Proportional funding sources for biobank: Institution core budget: 90% User fees: 10% Example input statistics: Overall response to consent (Yes%/No%/Unknown %): Overall response varies between different sample collections.
129
130 Normally less than 1% say No to research, the rest are positive responses. Total individual cases held: There are millions of samples in Uppsala Biobank as a whole, distributed through 131 research sample collections and 6 healthcare sample collections (in January 2013). The number of cases and samples varies from a wide range of a couple of hundred to millions of samples. For updated registry of sample collections and their constitution, see www.uppsalabiobank.uu.se. Percent of cases associated with fresh-frozen tumor biospecimens: At least 18000 cases are present in the sample collection of clinical pathology. There are more than 50000 fresh-frozen tumor samples in the collection. Percent of cases associated with fresh-frozen tumor and blood biospecimens: In January 2013 there were samples from approximately 1800 cases collected in the project called U-CAN. Example output statistics: Approximate number of studies supported last year: Uppsala Biobank administraters around 100 studies of human tissue samples per year connected to ethical approval (mostly clinical trials). About 40 percent of the studies withdraw tumor samples from the biobank. Approximate number of cases released last year: Approximately 1500 cases of fresh-frozen tumor biospecimens and 2000 cases from formalin-fixed and paraffin-embedded tumor tissue were released year 2012. Publications in past year (based on biobank and users): Unknown to us at this point.
BIOBANK PROFILE What are the most valuable/highest priority cases in your biobank? As a research infrastructure and center of competence, we support all research collections at Uppsala University and Uppsala County Council without prioritizing on the level of diagnosis and data. However, we do believe that samples collected prospectively, where preanalytic factors and casespecific data are collected in a structured way, will be a very important for the future. Within Uppsala Biobank there are existing sample collections with repeated and systematic measurements and clinical data that are very valuable for research. What are your major challenges? Collection of data and samples, both blood and tissue samples, prospectively is costly and requires collaboration among multiple people with various types of expertise. Collaboration relies on trust and keeping the trust everywhere is a big challenge, especially since staff and organizations changes over time. What would you do with $1 million to improve the value of your biobank? Invest in more infrastructure, with automated solutions that fit many research purposes. Also IT solutions are important to secure traceability and facilitate research. An investment that would improve the value of the biobank would be a system working as a research database. The database would be a platform where researchers could manage their own samples and connect to clinical data and analysis results.
BIOPRESERVATION AND BIOBANKING Volume 11, Number 2, 2013 ª Mary Ann Liebert, Inc. DOI: 10.1089/bio.2013.1123
Uppsala Biobank Address correspondence to: Malin Engelmark, Ph.D. Uppsala Biobank Dag Hammarskjo¨lds va¨g 14B, 1tr MTC-huset, Science Park 751 85 Uppsala Sweden
Introduction
U
ppsala Biobank in Sweden was founded in September 2008 in a collaboration between Uppsala County Council and Uppsala University. The purpose was to become a center of competence for biobank issues and an infrastructure for medical research. Prior to the formation of the Uppsala Biobank, Sweden’s Biobanks in Medical Care Act went into effect in 2003 and spurred research and healthcare principals to register their biobanks. The main goal for these biobanks was to fulfill the legal regulations that govern human tissue samples, but also to clarify rights and responsibilities regarding samples. In Uppsala, a vast majority of the samples were collected and stored within healthcare facilities at Uppsala County Council while Uppsala University housed samples for research and publications. The principals, represented by Uppsala University hospital and Uppsala University Faculty of Medicine, decided to found a common biobank organization by initiating and investing in Uppsala Biobank. The principals believed a united organization would result in benefits gained for all sample collections—facilitating tracing, security, quality assurance, and promoting research collaborations. Uppsala Biobank today represents the only biobank of the principals and includes all sample collections for both research and healthcare. The mission of Uppsala Biobank is to administer, establish, support, and maintain a stable biobank infrastructure; obtain and supply high competence and tools to fulfill laws and regulations; and perform services in relation to sample management and processing. The head of Uppsala Biobank is the biobank custodian of all sample collections and every sample collection also has a responsible person assigned to that collection. The principals are represented in a biobank council that meets four times per year. A sample collection can be used for either healthcare or research. The director of the clinic is the responsible person for healthcare sample collections at the department; for research sample collections the responsibility goes to a specific researcher. Legally approved written contracts are signed between the biobank custodian and the responsible persons for research collections. The contract gives the sample collection responsible person sole right to use of samples for research upon completion of informed consent and ethical approval. Uppsala Biobank as a center of competence for biobanking and as a research infrastructure has so far been a success. This is an example of how research and healthcare principals with common interest in using biobank samples can collaborate in a successful manner. In January 2013 Uppsala Biobank consisted of 131 research sample collections and 6 healthcare sample collections.
E-mail: [email protected] www.uppsalabiobank.uu.se Title of Biobank: Uppsala Biobank Site Location: Uppsala Biobank, Dag Hammarskjold’s vag 14B, 1tr, MTC-huset, Science Park, SE-751 85 Uppsala Contact information: Web: http://www.uppsalabiobank.uu.se/en/ E-mail: [email protected] Contact: Anna Beskow, Director Uppsala Biobank Start date of operations: September 2008 Date range of cases: From 1930s to present Category of biobank: Basic/Translational/Epidemiological/Clinical Focus of biobank: Includes basically all human diseases represented in 131 research sample collections and 6 healthcare sample collections. In the hospital integrated biobank service, samples are collected prospectively for 8 different cancer diagnoses, myocardial infarction, psychiatric disease and several others are starting up. At the pathology department, tissue from all diagnoses where there is adequate sample available is stored fresh frozen as a resource for research. Membership of biobank: ISBER (International Society for Biological and Environmental Repositories), ESBB (European, Middle Eastern & African Society for Biopreservation & Biobanking), BBMRI (Biomolecular Resources Research Infrastructure), Swedish National Biobank Council (NBR), Swedish Regional Biobank Centre, U-CAN (Uppsala-Umea Comprehensive Cancer Consortium), EpiHealth (Epidemiology for Health) and SciLifeLab (Science for Life Laboratory). Major source of funding for biobank: Funding from Uppsala County Council and Uppsala University Proportional funding sources for biobank: Institution core budget: 90% User fees: 10% Example input statistics: Overall response to consent (Yes%/No%/Unknown %): Overall response varies between different sample collections.
129
130 Normally less than 1% say No to research, the rest are positive responses. Total individual cases held: There are millions of samples in Uppsala Biobank as a whole, distributed through 131 research sample collections and 6 healthcare sample collections (in January 2013). The number of cases and samples varies from a wide range of a couple of hundred to millions of samples. For updated registry of sample collections and their constitution, see www.uppsalabiobank.uu.se. Percent of cases associated with fresh-frozen tumor biospecimens: At least 18000 cases are present in the sample collection of clinical pathology. There are more than 50000 fresh-frozen tumor samples in the collection. Percent of cases associated with fresh-frozen tumor and blood biospecimens: In January 2013 there were samples from approximately 1800 cases collected in the project called U-CAN. Example output statistics: Approximate number of studies supported last year: Uppsala Biobank administraters around 100 studies of human tissue samples per year connected to ethical approval (mostly clinical trials). About 40 percent of the studies withdraw tumor samples from the biobank. Approximate number of cases released last year: Approximately 1500 cases of fresh-frozen tumor biospecimens and 2000 cases from formalin-fixed and paraffin-embedded tumor tissue were released year 2012. Publications in past year (based on biobank and users): Unknown to us at this point.
BIOBANK PROFILE What are the most valuable/highest priority cases in your biobank? As a research infrastructure and center of competence, we support all research collections at Uppsala University and Uppsala County Council without prioritizing on the level of diagnosis and data. However, we do believe that samples collected prospectively, where preanalytic factors and casespecific data are collected in a structured way, will be a very important for the future. Within Uppsala Biobank there are existing sample collections with repeated and systematic measurements and clinical data that are very valuable for research. What are your major challenges? Collection of data and samples, both blood and tissue samples, prospectively is costly and requires collaboration among multiple people with various types of expertise. Collaboration relies on trust and keeping the trust everywhere is a big challenge, especially since staff and organizations changes over time. What would you do with $1 million to improve the value of your biobank? Invest in more infrastructure, with automated solutions that fit many research purposes. Also IT solutions are important to secure traceability and facilitate research. An investment that would improve the value of the biobank would be a system working as a research database. The database would be a platform where researchers could manage their own samples and connect to clinical data and analysis results.
