We hereunder to provide examples in the Benelux, Scandinavia and Europe of some of the different types of biobank networks mentioned above. Some or all of the networks described hereunder, could be considered a mixture of different types.
The ‘Karolinska Institutet Biobank’ in Stockholm (Sweden) could be considered a combination of a storage network and a network of cohorts. The Karolinska Institutet Biobank manages many different types of collections of HBM and data. Some collections are stored and managed at the request of researchers or health care authorities. The Karolinska Institutet Biobank however also manages HBM and data collected in the framework of large population-based cohorts – such as TwinGene cohort15, the ‘60-year old cohort’16 and the LifeGene17 cohort – and in the framework of disease based studies. The Karolinska Institute biobank offers different types of services to the principal investigators that store their HBM and data in the biobank Such services cover (i) advice on the planning and the ethical and legal compliance of a study; (ii) the registration, processing, storage and withdrawal of samples; and (iii) DNA extraction(47).
The Belgian Virtual Tumourbank18 (the ‘BVT’) is an example of a disease-specific, catalogue network. The Belgian Virtual Tumourbank was official created in 2008 as a result of the Initiative 27 of the Belgian National Cancer Plan. The general aim of this initiative was the promotion of translational cancer research and the collaboration between cancer researchers in Belgium. The BVT consists of 11 hospitals, among which the major Belgian university hospitals. A Royal Decree of 20 September 2009 indicates the conditions that a hospital has to meet to receive financing for its participation in the BVT. The tumour samples and associated data are stored and managed by the biobanks participating in the BVT. The Belgian Cancer Registry coordinates the activities of the BVT. It created – in collaboration with the different biobanks – a central database with minimum datasets on the available residual human tumour samples. A coded version of the central database is accessible to research groups, which allows them to search for HBM and data that could be interesting for their research projects. When a researcher wants to use particular HBM and data in his research project, he has to submit an access request to the local biobanks that store and manage the HBM and data (48).
14 http://epic.iarc.fr/about/cohortdescription.php 15 http://ki.se/en/meb/twingene-and-genomeeutwin 16 http://ki.se/en/imm/the-60-year-old-cohort 17 http://lifegene.ki.se/ 18 http://www.kankerregister.org/tumourbank.aspx?url=BVT_home
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Another biobank network initiative in Belgium is the creation of a Flemish Biobank by the Centre for Medical Innovation (CMI). The CMI was officially founded in December 2009 at the initiative of the Flemish Government, the Flemish Ministry of Economy and Scientific Affairs, the 5 Flemish University Medical Centres and representatives from the Health Care Industry. The first project of CMI was the creation and coordination of a Flemish biobank. This will be a virtual biobank (network), which focuses on specific diseases fields. CMI developed harmonized quality criteria for HBM and accompanying clinical data sets. It emitted a report, entitled the ‘Ethical and Legal Framework applicable to Biobanks.” CMI furthermore aims to create a central IT backbone that should result in a database that would allow translational research projects between different universities and/or industry19. The different participating hospitals maintain the custodianship of their collections of HBM and data. In the future the Flemish Biobank initiative aims to establish collections of HBM and data “in disease
domains in which the Flemish knowledge institutes and Flemish industry has a strong position.” Pilot
biobanks will be set-up in the 5 disease domains: (i) sudden cardiac death; (ii) diabetes; (iii) inflammatory bowel disease; (iv) rheumatic arthritis and (v) diabetes(49).
Another initiative that could – to a certain extent – be considered a catalogue network is the Danish National Biobank initiative. The initiative created an online registry that enables researchers to access the combined data of all Danish biobanks that participate in the initiative. In the future the Danish National Biobank Registry wants to provide an overview and access to more than 15 million HBM – relating to different diseases – in existing and future collections. When a researcher has found the HBM and data that he wants to use in a research project, he should contact the Coordinating Centre that will assist him in obtaining access to the HBM and data20.
The OECI-TuBaFrost consortium is a European virtual biobank network (or catalogue network) that brings together biobanks specialized in cancer. The consortium initial started as a research project funded by the 5th Framework Programme of the European Union. Later the project resulted in the creation of a consortium between the different participating biobanks. From 2006 until 2010 the TuBaFrost Consortium was integrated into the Organisation of European Cancer Institutes (OECI) Pathobiology working group. This working group supports the European virtual biobank infrastructure in the management of the exchange platform OECI-TubaFrost. The further development of OECI- Tuba Frost has been possible through support from the EurocanPlatform project. The OECI- TuBaFrost exchange platform contains a central database application. This application allows to search which HBM and data are available in the collections of the different participating biobanks. The platform supports the exchange of HBM and data within a project consortium. Access to such HBM and data is limited to the members of the consortium, while the database is accessible to all OECI members(50,51).
19 http://cmi-vzw.be/history.htm
Page | 15 The Parelsnoer Institute in the Netherlands could be considered a diseased-focused, partnership network. This initiative is a collaboration between all eight Dutch university hospitals. Its aim is to create a national research infrastructure for clinical epidemiology(31). The Parelsnoer Institute consisted in 2007 of eight cohorts. They each focus on one syndrome, also called pearls. These different syndromes are: inflammatory bowel disease, rheumatoid arthritis, stroke, hereditary colon cancer, leukaemia, neurodegenerative diseases, kidney failure and diabetes. Those eight syndromes were chosen due to their importance for the Dutch health care system. In the course of the project new cohorts have been added in relation to the following syndromes: CONCOR (congenital heart defects), endocrine tumours, ischemic heart disease and pancreas(52). One expects to accelerate research by focusing on the collection of HBM and data and research projects concerning a limited number of syndromes(53). The cohorts provide access both to HBM and data collected in a prospective manner(54).
An example of an international expertise network is the Public Population Project in Genomics and Society (P³G). P³G is a not-for-profit consortium. It provides the international research community with online access to expertise, tools and services in relation to ethical, legal, social, epidemiological and technical issues with respect to (population-based) biobanks. P³G also manages an online catalogue with information on large-population based biobanks. Finally P³G participates in the development of the BRIF (Bioresource Research Impact Factor)21.
The ‘Biobanking and Biomolecular resources Research Infrastructure’ (BBMRI) was initiated in 2008 under the European Research Infrastructure Preparatory Phase of the ESFRI roadmap. It was funded by the European Union (9,10). The preparatory phase of BBMRI lasted for three years and came to its end in January 2011. On 3 December 2013, BBMRI was officially awarded the Community legal framework for a European Research Infrastructure (ERIC). BBMRI-ERIC22 is established as a pan- European (distributed) research infrastructure and network. It consists of existing and de novo population-based and disease-oriented biobanks, as well as biomolecular resources. The aim of BBMRI-ERIC is to facilitate access to the different biobanks and biomolecular resources and to support high quality biomolecular and medical research (37). That is why BBMRI-ERIC wants to act as an “umbrella network” that contributes to the development of common standards and a clear ethical and legal framework(9,10). A general inventory of the different participating biobanks and biomolecular resources is currently being created as well as common access requirements (9,10). The structure of the BBMRI network is represented as a “disturbed hub and spoke scheme” (see Figure 1). In this scheme, the various biobanks, biomolecular resources and specialized technology centres are connected via their specific hub.
21 http://p3g.org/about-p3g/glance
22 The Biobanking and Biomolecular resources Research Infrastructure-European Research infrastructure consortium
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Figure 1: Distributed hub and spoke structure of BBMRI
Each participating country has its own national hub or node. This hub coordinates the national biobanks, biomolecular resources and technology centres and links its activities with the pan- European activities of BBMRI-ERIC. National hubs have been created or are being created in Austria, Belgium, Czech Republic, Estonia, Finland, France, Germany Greece, Italy, Malta, the Netherlands and Sweden. Norway, Poland, Switzerland, Turkey and IARC23/WHO are observers to BBMRI-ERIC. Sweden, Norway, Denmark, Finland, Iceland, the Faroe Islands and Estonia have created BBMRI Nordic. BBMRI Nordic is a network comprising national infrastructures of those Nordic countries engaged in facilitating biobanks activities. The BBMRI-ERIC consortium today consists of more than 59 members and 225 partners from more than 30 European countries. The headquarters of BBMR- ERIC are established in Graz in Austria. The headquarters coordinates the interaction between different national hubs. It created a virtual search platform that provides access to research resources, facilities and expertise, available in the different participating countries24.
23 The International Agency for Research on Cancer http://www.iarc.fr/ 24 http://bbmri-eric.eu/2
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