#14 IN THIS ISSUE. #14 October 2014

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1 #14 IN THIS ISSUE Editorial 2 BBMRI.se Communication Plan and LinkedIn Group 3 Sharing is ethical! 3 Interview with Anders Johansson about a new biobank-based project in Umeå 4 Meeting report HOBB Promoting biobanking in low- and middle income countries: an important infrastructure for cancer research 6 Successful use of population based cohorts for advanced epidemiological research 8 Interview with Linda Paulson, new head of Sahlgrenska Biobank 10 The history of MIABIS- the Minimum Information about Biobank Data Sharing 11 LifeGene for the future 12 Upcoming events 12 #14 October 2014 cover image: R. Dray/IARC 2014

2 2 biobank SWEDEN Editorial by Joakim Dillner, Acting director BBMRI.se Promoting international excellence in the infrastructure for medical research Since the launch of BBMRI-ERIC, the European medical research infrastructure is now developing rapidly towards excellence and it is a privilege for BBMRI.se to be part of this development. Research infrastructure refers to facilities, resources and related services used by the scientific community to conduct research. On an international scale, research infrastructures offer services to users from different countries. An important function of a research infrastructure is also to attract young people to science and so help to shape scientific communities. The aim is that BBMRI.se should serve as a hub for providing services in essential elements of research such as i) access to high quality and standardized biospecimens ii) access to high quality and standardized data iii) access to high performance molecular analysis platforms and/or on-demand generated molecular data iv) development, implementation and monitoring of best practises and v) education, expertise and advice. A high quality research infrastructure should be at the center of a knowledge triangle involving research, education and innovation. That is, the infrastructure should both be active in the production of knowledge through research, the diffusing of knowledge through education and the implementation of knowledge through innovation In order to enable comparison of research results from different parts of the world, it is imperative that research infrastructure hubs collaborate on an international scale, in particular in areas such as standardization, quality control and coordinated development. An international infrastructure for medical research will promote international progress in medical research. In this issue of Biobank Sweden, you can read about the progress in many of these essential areas. We continue to prioritize international networking, such as in assisting WHO/IARC with global biobank and cohort building in the BCNet and in shaping international data standards in MIABIS. Promoting research and high quality are interlinked concepts, as quality is defined as being fit for purpose which in the case of biobanking is to enable research. Successful examples of this are presented. It is also gratifying to see that efforts towards shaping a community in biobanking sciences through communication, networking and education are well underway. Ethics is a prime priority for BBMRI.se, as exemplified by the ethical framework for sharing samples and data in the best interest of the patients. Continued shaping of a common ground of ethical and moral values will facilitate that BBMRI.se and our partners will always be focusing, not on their own interests and settings, but on the needs of the international research that is, in turn, an essential interest of the patients.

3 In the last meeting of the BBMRI.se board on September 19, a formalized communication plan was approved. The communication plan can be downloaded from the BBMRI.se internal web pages. Overarching missions of the plan are to increase knowledge about BBMRI.se tools, services and guidelines highlight the importance of biobank-based research for progress within medical diagnostics, health care efficiency, health and welfare in a wider perspective and the general competitiveness of Sweden analyse and comment biobank-related issues from an ethical, legal and societal perspective create a feeling of togetherness in the organisation influence the development of biobank-based research in an international perspective biobank SWEDEN 3 News In Brief BBMRI.se Communication Plan and LinkedIn Group To achieve these goals, communication in many different channels is envisaged. The use of social media in innovative ways is one of them. Coverage and reporting from international meetings in the field is another. Target groups are both clinical and academic researchers, biobank personnel, policy makers and the public. For those of you interested in social media updates, that is meeting announcements and pieces of information in digestible and dispersable format, please join the conversations in the BBMRI. se LinkedIn group, or follow the twitter BBMRI.se Communications Director Ulla Rudsander Sharing is ethical! To improve health care and validate research, we need to provide easier access to samples and data: Access that at the same time is ethical. This is the guiding principle in a new charter for sharing of biospecimens and data published by an international group of researchers in the European Journal of Human Genetics. The value of collections of data and biospecimens is rising. But this doesn t mean there is more sharing of samples or data. One reason is the different ethical and legal frameworks that are making it difficult for researchers in different countries to collaborate. Deborah Mascalzoni is one of the authors. According to her, another reason has to do with the investment it takes to build a sample collection: Sometimes researchers are not that keen on sharing. There is a fear that the valuable work they have put into their sample collection will not be recognized. To try and solve that problem, we have provided a framework for recognition in the charter, says Deborah Mascalzoni. Sharing stimulates research, making the process less burdensome. At least in theory. But the ethical and legal frameworks in different countries sometimes contradict each other, making collaboration difficult. The charter conforms with relevant regulation, both legal and ethical and provides a comprehensive tool for researchers. It deals with consent, data quality, criteria for acknowledgement and much more. It also provides a very hands-on tool: Data and material sharing agreements are often written in a legal language that can be difficult to understand for the scientists and administrators that use them. To help solve this, the charter provides a clear and simplified template. The same principles can be used for other access agreements. Text: Josepine Fernow Ref: Mascalzoni D, et al. International Charter of Principles for Sharing Bio-specimens and Data, European Journal of Human Genetics 2014, in press, DOI EJHG

4 4 biobank SWEDEN Interview with Anders Johansson about a new biobank-based project in Umeå In 2014, BBMRI.se operations in Umeå were extended to include a new national biobanking project. Biobank SWEDEN talked to Anders Johansson about the origins of this project and some future plans. What s your background? In my PhD thesis from 2000, I worked on a microbial inflammation project with focus on host-parasite interactions in odontology, that is the processes behind periodontitis. After a post-doc and research assistant position at Umeå University, I continued to study inflammation mechanisms and expanded the view to include biobanking sciences. Currently, I work both as teacher, supervisor of PhD students, conducting inhouse research projects as well as externally financed research. Odontology and host-parasite interaction is my excellence area. The infection questions in broader sense are interesting for development of BBMRI.se What do you want to achieve? I took part in two BBMRI.se meetings in the past year where we discussed how to make better use of the Swedish biobanking infrastructure. In one of those meetings I presented the idea to start immunity surveillance using biobank samples. Since then I have been to the Public Health Agency of Sweden (PHAS) to discuss the project and they are very interested. PHAS makes estimations of immunity in the population which form the basis for decisions about vaccination. At present diagnostic samples are taken from clinical chemistry departments at hospitals and in the last immunity estimation from 2008, a more than 80% loss of participant samples was observed. Especially in an acute, epidemic situation, the BBMRI.se infrastructure could help in collecting samples more quickly and with better coverage. We are also starting to build a microbial biobank together with PHAS, where we want to make common microbes associated with epidemic outbreaks (for ex influenza viruses) or strains of multi-resistant bacteria accessible. There is a lot of knowledge about biobanking of serum samples, but for microbial samples the networks are not yet in place. In the first round we have made contact with Clinical Microbiology labs across the country, to map which microbes have been stored and if they are well documented. Matching serum samples from patients with microbial samples represents new research opportunities. Technological advances that allow complete genomes to be analysed quite quickly can in the future add even more value to microbial biobanks. The scientific leader of the national immunity surveillance project is Anders Sjöstedt at the Department of Clinical Microbiology, Umeå. Göran Hallmans is involved as biobank representative as well as myself. In addition to the PHAS, we also collaborate with infection specialist Mats Forsman at FOI, and Björn Olsen at Uppsala University, the latter having already large collections of microbes. What s the role of BBMRI.se in biobank-related activites in Umeå? An important step in the immunity surveillance project is to make samples searchable on a national level, both clinical samples and research samples. That s why we want to connect to and build

5 On 24-25th of September 2014, the 3rd Hands on: Biobanks (HOBB) Conference hosted by the Finnish node of BBMRI in Helsinki. Over 250 participants attended the conference, representing academia, industry, patient groups, policy makers, the public and legislators. The meeting was based on the interactive concept, originally developed for the first HOBB meeting in Uppsala. The meeting featured Idea Labs, the Route, an interactive exhibition where the biobank sample is followed from needle to freezer, plenary sessions, educational sessions as well as ethics and legal science café. News In Brief Meeting report: Hands on: Biobanks From Biobanks to Medical Innovations and the BBMRI-LPC Forum. biobank SWEDEN 5 The plenary sessions focussed on implementation of the framework for responsible sharing of genomic and health-related data in for example aging research, rare diseases and genomic research in Africa. The keynote lectures in the areas of clinical biobanks and personalized medicine provided an update to the possibilities of the new biobanks operating under the unique Finnish biobank legislation. The leading themes in the idea labs and educational session gave a perspective to utilization of genome data and the latest developments in the biobank area. HOBB2014 integrated the International Biobanking Summit III, arranged by the International Society for Biological and Environmental Repositories (ISBER), and other international biobanking organisations. Many participants came directly from Tallinn by boat where the biobanking week in the Finnish Gulf had begun on Monday 22nd of Sep with the Annual EuroBio-Forum Conference The next Hands on: Biobanks 2015 conference will be hosted by BBMRI.it in Milan, 29-30st of July. Save the date! Text: Ulla Rudsander up the informatic tools within BBMRI.se, like the BBMRI.se Sample Collection Register. Depending on the study question, immunity surveillance involves samples from different cohorts, of different geographical areas and age groups. In Västerbotten (260,000 inhabitants) there s a more than 50 % coverage of the whole population, involving multiple samples taken at different time points of the same individual. An ongoing host-parasite project at Biobanken Norr that investigates inflammation baseline and uses multiple samples per individual, is the identification of risk-individuals by early biomarkers for Alzheimer s disesase. Within BBMRI.se, I have also been involved in investigations of the sample quality of existing collections at Biobanken Norr, to see how we can make better use of samples. We have studied what can be extracted from buffy coat, how to isolate thrombocytes and their microrna. A promising way of studying gene expression is methodology for methylated genomic DNA. Exosomes can also be very exciting for studies of transcriptomics from biobank samples. However, more validation is coming to make these technologies useful. In short, what are your wishes when joining the BBMRI.se organisation? Historically the connection in Sweden between biobanking and infection medicine has been quite weak. We would like to explore the intersection and find new ways of national collaboration. Text: Ulla Rudsander

6 6 biobank SWEDEN Promoting biobanking in low- and middle-income countries: an important infrastructure for cancer research Recognizing the need to increase the level of awareness, education, and biobanking infrastructure in low- and middle-income countries (LMICs), and to address the underavailability of high-quality biospecimens for cancer research, the WHO/International Agency for Research on Cancer (IARC), together with the United States National Cancer Institute s Center for Global Health (NCI-CGH) and other international organizations, such as BBMRI-ERIC, BBMRI.se and P3G, launched the LMIC Biobank and Cohort Network (BCNet; The overall objectives of the network are to promote capacity-building in LMIC biobanks and to increase opportunities for training and funding. BCNet aims to raise awareness among stakeholders, communities, and decision-makers of the benefits of biobanking as an important infrastructure for cancer research. As a first step in the creation of BCNet, IARC conducted a situational analysis of infrastructure and facilities from December 2012 to March 2013, in order to gather information on biobanking activities, research infrastructure, and resources. The survey was conducted within 27 institutions in 17 LMICs in Africa (n=12), Asia and Europe (n=5). Respondents were also asked about their initial reactions to the idea of creating repositories of high-quality samples, and their willingness to participate in a biobank network. Participants were identified from multiple sources, including members of the European, Middle Eastern & African Society for Biopreservation & Biobanking (ESBB), members of the African Organisation for Research & Training in Cancer (AORTIC), and IARC collaborators working in LMICs. The full findings of the survey (titled Infrastructure and facilities for human biobanking in low- and middle-income countries a situational analysis ) will be published shortly in the journal Pathobiology. With the survey results in mind, BCNet was established as an opportunity for LMICs to work together in a coordinated and effective manner to jointly address the challenges of creating and sustaining a biobanking infrastructure. In addition, the network will facilitate the sharing of resources (e.g. expertise and protocols) and the development of joint projects, increasing the competitiveness of LMIC biobanks in applying for international funding. Membership to BCNet is open to all LMIC biobank institutions committed to endorsing the BCNet Picture: R. Dray/IARC 2014 principles and regulations, and to contributing to reaching the network s objectives. Members are also committed to collaborating with other BCNet members and partners with regard to resources and BCNet objectives, and to providing expertise for common benefit. Similarly, BCNet members will contribute to developing jointly agreed standard protocols for sample collection, annotation, storage, and distribution that fulfil the criteria for scientific research. To date, BCNet members include 16 countries, from Africa (Cameroon, Egypt, Nigeria,

7 Kenya, Uganda, Senegal, South Africa, Sudan, the United Republic of Tanzania, The Gambia, Tunisia, and Zimbabwe), Asia (India, Jordan, and Thailand), and Europe (Lithuania). BCNet partners are international organizations that are very active in the field of biobanking and cohort building, and that can establish a strong partnership with the network. They also contribute to all aspects of biobank networking (including education and training); provide access to international guidelines, protocols, and standard operating procedures (SOPs); and provide links for international research collaboration. BCNet partners include NCI-CGH, the International Society for Biological and Environmental Repositories (ISBER), Biobanking and Biomolecular Resources Research Infrastructure (BBM- RI-ERIC and BBMRI.se), ESBB, the Latin American and Caribbean Biobank Network (REBLAC), AORTIC, the Spanish National Cancer Research Centre (CNIO), the Centre of Genomics and Policy (Canada), and the National Cancer Research Institute (NCRI, United Kingdom). An 11-member BCNet Advisory Committee has been established to advise the IARC Director, and Working Groups (WGs) have been established. The WGs will address four key areas: laboratory information management services (LIMS); ethical, legal, and social issues (ELSIs); education and biobank SWEDEN 7 training; and quality assurance. The objectives of the WGs are: to identify training needs and develop proposals for implementing appropriate training programmes, to anticipate and plan for funding and networking opportunities, to develop appropriate tools (including LIMS) for the implementation of joint projects for the benefit of network members, and to provide proposals for quality assurance programmes. The network s first joint project will be to provide a catalogue of its members resources, facilities, and competencies, in order to provide information on resources that could be available for sharing between network members and assist in addressing the underavailability of high-quality samples for scientific research. The catalogue will be developed by IARC in collaboration with BBM- RI.se (Sweden). The network website ( bcnet.iarc.fr) has recently been launched in the autumn. For more information about BCNet, please contact Dr Maimuna Mendy (coordinator), IARC, 150 Cours Albert Thomas, Lyon Cedex 08, France; [email protected], Text: Maimuna Mendy Picture: R. Dray/IARC 2014

8 8 biobank SWEDEN Successful use of population-based cohorts for advanced epidemiological research Over the years the population-based cohorts, and associated biobank facilities have formed a rich asset for advanced epidemiological research, mostly focusing on the etiology of chronic disease conditions such as cardiovascular disease, type 2 diabetes and cancer. In addition, the cohorts have also been used for some other epidemiological projects for understanding the risk factors and pathophysiology behind fragility fractures caused by osteoporosis, hepatic disease and psychiatric disorders. It started in the 1960 s with the first epidemiological cohort Men born in 1914, consisting of only a few hundred men to be followed over time. The attendance rate was impressive, up to 85%. In the 1970 s the next cohort called Malmö Preventive Project (MPP) started with baseline between 1974 to 1992 (33,000 subjects, 2/3 men; mean age years). After that the Malmö Diet Cancer (MDC) study started, carried out from 1992 to 1996 (30,000 subjects, 1/3 men, mean age 56 years). These cohorts also have rich biobanks with samples of blood, serum, plasma and erythrocyte concentrations (MDC). The data have been used over the years for an impressive number of excellent papers, many of them in high-impact journals, and forming important backbones of the Strategic Research Area (SRA) Epidemiology for Health ( linking the Lund and Uppsala universities for excellence in epidemiological research. The Malmö Preventive Project (MPP) cohort The MPP has a very rich access to register followup endpoints based on annual register linkages with national registers on morbidity and mortality [1]. The available DNA was sampled at the MPP Re-examination in 2002 to 2006 (n= 18,000) and not at baseline meaning that selective survival bias could influence the interpretation of the data. As the mean age at the MPP re-examination was 70 years this must influence the evaluation of any genetic prediction analyses. However, we also have accumulated a few years of prospective data following the MPP Re-examination with latest follow-up in Access to the MPP database and biobanks is open to academic researchers after a formal application and ethical approval. The Malmo Diet Cancer (MDC) cohort The MDC is a very large cohort study (n= 30,000, with 28,000 forming the so called EPIC cohort) with access to rich dietary data and DNA (mini-prep) from baseline. The MDC is part of the European network collaboration EPIC with substudies on cancer risk, and risk of type 2 diabetes as well as cardiovascular disease. Over the last few years GWAS data have been gathered from 15,000 subjects. This has led to a number of publications in high-impact journals. Further details can be found here: org/catalogue.htm?accessid=34 In line with the directives from the Swedish Research Council of Sweden ( Vetenskapsrådet ) that supported our population-based cohorts one can for both the MPP and MDC cohorts apply for data and biobank samples to a Steering Committee for data handling here: med.lu.se/klinvetmalmo/befolkningsstudier/ malmoe_kost_cancer_och_malmoe_foerebyggande_medicin Recent developments The Malmö Offspring Study (MOS) Our latest cohort was started in March It consists of children and grandchildren (a total of 15,000 subjects) to index subjects enrolled in the early 1990 s in the MDC Cardiovascular Arm study., Most of them are living in the southern Sweden area. MOS has the intention to look for disease etiologies in families, and will try to dissect the so called missing heritability. This term depicts the still largely unknown contribution of environmental, epigenetic and lifestyle associated factors that can contribute to understanding why some chronic disease conditions cluster in

9 families. The genetic risk scores have only been shown to explain a few percent of this clustering of disease in families and hence the search for the missing heritability. One factor of considerable interest is the potential role of the diet-genemicrobiota interaction that we now try to explore in MOS. Pilot study data have shown promising results to be further analyzed, for example associations between dietary intake and microbiota patterns. For more details, please visitwww.med. lu.se/mos. biobank SWEDEN 9 The EpiHealth cohort and SCAPIS For the sake of completeness, two other on-going population-based cohorts in Malmö ought to be mentioned. The first one is the EpiHealth Cohort in subjects aged years that started in Uppsala in 2011 and in Malmö in 2012 with the ambition to establish a rich cohort and work closely with the LifeGene cohort at Karolinska Institutet, Stockholm, with its non-overlapping age range 0-45 years. Both cohorts have biobank storage at the BBMRI.se national storing facility. In March 2014 the Malmö branch of SCAPIS started, a national screening study for advanced phenotyping of cardiovascular and pulmonary functioning. In addition, biobank resources are developed, in collaboration with the local county council Region Skåne. Both the EpiHealth cohort (17,000 participants in Uppsala and Malmö alltogether) and SCAPIS will continue for a number of years. Summary There is no doubt that Sweden is able to contribute to researchers involved in epidemiology and disease etiology with our extensive and rich cohorts and biobank material. The cohorts in Malmö have played an important role so far, and will likely become even more useful as endpoints now accumulate with information on hospitalization and diagnosis as the participants age. Many have already died. The next step is to link data from medical records in primary health care. The biobanks in Malmö have their own funding and leadership structure, but the node of BBMRI.se at Lund University also plays an important role to support developments of the biobank and the cohort infrastrucutre, including the collaboration with Region Skåne. References: 1. Berglund G, Nilsson P, Eriksson KF, et al. Long-term outcome of the Malmö preventive project: mortality and cardiovascular morbidity. J Intern Med. 2000;247: Manjer J, Carlsson S, Elmståhl S, et al. The Malmö Diet and Cancer Study: representativity, cancer incidence and mortality in participants and nonparticipants. Eur J Cancer Prev. 2001;10: Rukh G, Sonestedt E, Melander O, et al. Genetic susceptibility to obesity and diet intakes: association and interaction analyses in the Malmö Diet and Cancer Study. Genes Nutr. 2013;8: Lind L, Elmståhl S, Bergman E, et al. EpiHealth: a large population-based cohort study for investigation of gene-lifestyle interactions in the pathogenesis of common diseases. Eur J Epidemiol. 2013;28: Almqvist C, Adami HO, Franks PW, et al. Life- Gene--a large prospective population-based study of global relevance. Eur J Epidemiol. 2011;26: Text: Peter M Nilsson

10 10 biobank SWEDEN Interview with Linda Paulson, the new Head of Sahlgrenska biobank What s your background? I have a PhD in medicine at the department of Neurochemistry in Mölndal. After that I completed a post doc at the Arvid Carlsson Institute and a second post doc at Rikshospitalet in Oslo. In 2011 I started at Oslo University Hospital where I was in charge of setting up a biobank with five employees. In Oslo, the storage facility was common to all the Oslo hospitals which had many advantages, something I hope we can achieve also at Sahlgrenska University Hospital. What type of service does Sahlgrenska Biobank (SaB) offer? You could say that we are helping researchers in three different ways. We are including new sample collections, we take care of already existing sample collections lacking an owner and we have also created a structure that involves fluidsample collections at Sahlgrenska Hospital and Sahlgrenska Academy for new collections to be included in our biobank. We also administer the Region Västra Götaland s e-biobank which is part of the Health and Social Care Inspectorate (IVO) and records of incoming e-sample collections. What kind of advice and training do you offer? We spread knowledge by offering training to relevant staff on the laws and regulations governing biobanking activities, in addition tolocal regulations and guidelines. We also provide advice and templates for biobank research in connection with the ethics application, biobanking applications and development of patient information. To ensure traceability of biobank samples we offer IT support for sample collection documentation. SaB was recently made part of Gothia Forum*, what benefits with this merge do you see? This means we can offer full support to researchers and companies throughout the whole research process, from concept to implementation, testing and follow-up. I believe that together we can help to strengthen clinical research both in Region Västra Götaland and in Sweden. Which research projects are SaB involved in at the moment? The largest study we are working with right now is SCAPIS (English Cardiopulmonary bioimage Study), a national Swedish research project within the heart, blood vessels and lungs filed, conducted by Sahlgrenska University Hospital and the University of Gothenburg in collaboration with the Swedish Heart-Lung Foundation. A pilot study with 1,100 individuals was conducted in 2012 and a further approximately 5,000 volunteers will participate in Göteborg. We also have several other exciting projects in the pipeline that we are looking forward to. How can regional biobanks help strengthen national clinical research in Sweden? We facilitate meeting applicable laws and regulations by ensuring traceability and safety. We also make it easier for the individual researcher and safer for the patient as we provide better overview of all sample collections. Further. we believe that it promotes collaboration between researchers and institutions by making the collections searchable. Researchers can thus discover new opportunities for collaboration. Last but not least, we strengthen the quality of clinical research as samples are stored securely and stably for a long time. How do you use BBMRI as a national biobanking platform? BBMRI.se is a valuable network which provides opportunities for collaborations nationally. All the members of our group just got back from the Hands On: Biobanks conference in Helsinki and we are all loaded with new ideas. Text: Åsa Särlvik

11 The history of MIABIS the Minimum Information about Biobank Data Sharing biobank SWEDEN 11 Dr Sakari Tamminen is an anthropologist of tech- nology working as an Academy of Finland Post- doctoral Researcher at the University of Helsinki. His project studies the standardization of digi- tal biobank standards across the Nordics and the EU. Loreana Norlin works as one of the key persons run- ning the standardiza- tion of biobank data sharing, and her inter- view published here is part of the research diving into the prac- tices or the making of the standards. What is it like to work at BBMRI.se and with MIABIS? It s diverse and fun. The MIABIS project is now a big collaborative project; consisting of some 20 representatives from eight BBMRI countries under the umbrella of BBMRI-ERIC. You could say that I am the person organizing the devel- opment project for MIABIS 2.0, when it comes to organizing the meetings, writing the min- utes, updating the dataset on our Wiki, inviting people, answering questions from outside, etc. How do you balance integrity and the bounds of the Data Privacy Act and the benefit of the population and the research community of a more open data sharing? standard dataset already developed during the BBMRI preparatory phase in 2008/9 laid the foundation for MIABIS. What kind of feedback did you receive when initially introducing the model to the international audiences? MIABIS has gained much more attention outside of Sweden, especially in the EU. The logical first step to connect the biobanks is to know what they are and what they contain and this is what we aim at here. I think we are successful because we were first with making a minimum data set for biobanks that could be adopted by all biobanks around the world by asking ourselves what the information is that all biobanks have in com- mon. We have been open and invited everyone from our fellow BBMRI countries that wanted to be part of the working group. My experience is that people are very devoted and want to con- tribute with their time and knowledge. It is also politically important to have everybody on board. With BBMRI-ERIC we now have an easier way of collaborating across countries. The MIABIS pro- ject is gaining more weight now as an ad hoc- standard being accepted by all BBMRI countries. What is your short-term goal with the MIABIS work? To publish the improved version, MIA- BIS 2.0, and have it implemented in the new European biobank catalogue. Text: Sakari Tamminen That really links back to the birth story of MIABIS. What happened is that we wanted to extend the Swedish Biobank Registry (SBR), with sample data for researchers, to make it easier for researchers to find samples and re- lated biobank data, but this did not work out for various reasons. Therefore, we created a searchable database with only meta- data about sample collections (bbmriregister. se).this, together with the

12 12 biobank SWEDEN LifeGene for the future! LifeGene is celebrating its 5th birthday by hosting a workshop at KI LifeGene for the future. On September 5th, 2014 about 40 persons who one way or another have been engaged in LifeGene met to start the next era for LifeGene. After a short introduction and welcome by Life- Gene s scientific director, Nancy Pedersen, it was time to get to work. In smaller break-out groups the above mentioned topics were discussed and all stones were turned in order to set the tone for the upcoming years for LifeGene. LifeGene is now in a position to refine both recruitment and data collection. During 2014/2015, LifeGene will focus on recruitment and retention through more efficient marketing and recruitment efforts. The social media efforts will be broadened, and targeted marketing through events and the media will be looked at. Data collection can also be improved. One of the important conclusions of the sample handling break-out group was that we should maintain the current cold-chain, but that we should drop the citrate plasma tube. The workshop also decided that we can improve some of the modules in the questionnaire. It became apparent at the meeting that the scientific community is not aware of the wealth of information that we have available. Fortunately, with the help of BBMRI.se we are now working on getting a data warehouse put together, where we can make it easier for researchers to see what is already available in LifeGene. Meta-data will soon become available. This is also being done in collaboration with our sister study, EpiHealth, and will vastly increase the value and synergy of both studies. LifeGene needs to be made more visible by publishing high impact papers. We have successfully had one call for proposals and currently there are 6 groups using LifeGene data and/or samples in their studies. Another call for proposals will be announced. Many researchers may be interested in genetic studies, and LifeGene will canvas those to see if we can put together a consortium to enable support for GWAS of some sort. Finally, the workshop discussed various aspects about the organization and leadership of LifeGene. LifeGene will work towards identifying a group of enthusiastic co-pis, each with clear responsibilities and interests in various aspects of LifeGene. We are also looking for including ALL those of you who are interested in LifeGene in becoming ambassadors for this exciting cohort!! Text: Maria Berner Holmström Upcoming Events Oct Biobanking sciences in era of Personalized Medicine, Course Sympisium, and BBMRI.se Open User s Meeting arranged at Medicon Village, Lund. Read more Sciences-in- the-era-of-personalized-medicine/. 8 Dec Common sense and common pitfalls in biobanking. Lecture by Professor Allison Huber, University of Minnesota. The lecture will be held at Karolinska Institutet Solna, Lennart Nilsson lecture hall, Nobels väg 15 A. Read more Common-Pitfalls--in-Biobanking/ Feb BBMRI.se course: Biobanking as a resource in biomedical research. Download the course programme here: Kalenderhändelser/kursinfo%20till%20BBMRI% pdf biobank SWEDEN is the newsletter of the BioBanking and Molecular Resource Infrastructure of Sweden (BBMRI.se). BBMRI.se is part of the European biobanking infrastructure BBMRI ERIC and is funded by the Swedish Research Council and by partner universities. biobank SWEDEN is published four times per year. To stay informed subscribe to [email protected]. Also visit to find the newsletter as a pdf. Editorial board & lay-out: Ulla Rudsander and Loreana Norlin Publisher: Joakim Dillner