Biobanks play a crucial role in the treatment of complex diseases such as cancer, diabetes and Alzheimer’s disease, where the cause is a combination of a large number of small, often additive effects. Biobanks are similarly valuable in the study of rare diseases. The only way to understand the complexity of human disease is to study biological samples and corresponding epidemiological, clinical, biological, genealogical and molecular information from large numbers of both patients and healthy individuals. Biobanks thus provide the critical sample volume for researchers to undertake statistically powerful research.
The Biobanking and BioMolecular Resources Research Infrastructure—European Research Infrastructure Consortium (BBMRI-ERIC) provides fair access to quality-controlled human biological samples and associated biomedical and biomolecular data. Mayrhofer et al. (2016) write that it was one of the first projects to enter the preparatory phase of the European Strategy Forum on Research Infrastructures (ESFRI). With a €5 million investment, it grew into a 54-member consortium with more than 280 associated organizations (largely biobanks) from over 30 countries in just three years. Founded in 2013, BBMRI-ERIC created its governance boards and approved the appointment of its directors during the first session of its assembly of members in 2014, and then set up its governance structure and launched its common service ethical, legal and societal issues (ELSI) initiative. BBMRI-ERIC will give special attention to rare diseases and to do so is exploring a common service on rare diseases in partnership with the RD-Connect project.
The BBMRI-ERIC is a truly pan-European health research initiative. It is unique because it is established to provide services across the board, to academic institutions and to the pharmaceutical and life sciences industries. Furthermore, its funding model allows both large member states such as Germany and France and very small member states such as Malta and Estonia to participate as equal partners. Mayrhofer et al. comment that through close interaction with other research programs, BBMRI-ERIC will play a major role in shaping the European research landscape and in positioning Europe’s research in the global context. In order to do this, BBMRI-ERIC has already signed a number of memoranda of understanding with other research infrastructure and biobanking initiatives, including EATRIS, a large European transitional medicine center.
In the last 12 months, BBMRI-ERIC has also begun implementing an information technology (IT) strategy to develop and support IT tools that can be used by biobanks and their users. BBMRI-ERIC has developed a directory that provides an overview of the BBMRI-ERIC ecosystem, with its distributed structure of national nodes, and helps users to identify biobanks of interest to them. For each biobank, the directory lists the following mandatory information: ID, type of biobank, description of the biobank and its compliance with the BBMRI-ERIC partner charter; contact information; material types available and order of magnitude of stored samples; available diagnoses; and optional information such as sample and data access policies and availability of various data types.
The authors note that this highly collaborative and unified approach to biobanking will increase efficacy and excellence in European biomedical research by facilitating fair access to a quality-defined disease-relevant biological resource. Furthermore, it will reduce fragmentation of the biomedical research landscape by harmonizing procedures, implementing common standards and fostering collaboration. It will also build capacity in countries with less-developed biobanking communities.
Mayrhofer, M.Th., et al. (2016) “BBMRI-ERIC: The novel gateway to biobanks. From humans to humans,” Bundesgesundheitsblatt – Gesundheitsforschung – Gesundheitsschutz, 59(3) (pp. 379–384).