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Harmonising population-based biobanks and cohort studies to strengthen the foundation of European biomedical science in the post-genome era

Final Report Summary - PHOEBE (Harmonising population-based biobanks and cohort studies to strengthen the foundation of European biomedical science in the post-genome era)

The strength and depth of European bioscience is founded, in no small part, on its rich collection of large population-based cohort studies. Unravelling the causes of complex diseases and translating these efforts into public health and clinical practice is the central focus of medical science. However, tackling these issues transcends the reach of individual studies due to a host reasons ranging from lack of statistical power, the need for multidisciplinary expertise, to issues of geographical variation in genotypes and environmental exposures. It is well recognised that progress will be heavily reliant on access to large-scale biobanks that curate a rich array of data spanning genotypes, biomarkers, clinical measures, environmental exposures, life-style and social factors plus biospecimens.

The projects long-term aim was to establish and maintain a cost-effective and 'harmonised' network of population-based biobanks and longitudinal cohort studies across Europe and in Canada to optimise the ability of biobanks to: communicate with one another, share ideas, information and data, and collaborate effectively in a complex world where laws and ethical guidelines often differ between nations and over time. PHOEBE worked to identify key issues and to help the groundwork for such harmonisation. A biobanking function at the 'European-level' means identifying candidate biobanks and establishing optimal procedures for harmonisation between them. Harmonisation implies the use, where possible, of complementary protocols, this is not the same as the scientifically restrictive (and therefore unattractive) demand for identical protocols. In meeting these aims it is essential to pay attention to retrospective and prospective elements in order to cover major cohorts that already exist and new or planned initiatives. Harmonisation of those features that are common to many such studies will help to:
(1) promote communication between major biobanking initiatives;
(2) enhance the effective sharing and synthesis of information and data; and
(3) avoid the expensive mistakes and inefficiencies that can arise when individual initiatives repeatedly 're-invent the wheel'.

Harmonisation of Europe's population-based biobank studies, in conjunction with its national health systems will place Europe in a unique position to capitalise on biomedical research opportunities today and long into the future of post-genomic science. If we can ensure that our biobanks are able to work together to address pivotal research questions that fall outside the scope of projects funded by single nations, or even of large cohorts running across several nations, we can ensure that Europe remains at the cutting-edge of biomedical research internationally.

Through its diverse approaches and activities PHOEBE successfully fulfilled its mission to promote harmonisation among epidemiological biobanks in Europe. Within the last year PHOEBE surpassed many of its original harmonisation goals and, through the coordinated efforts of multiple projects, the science of biobanking matured substantially during PHOEBE's lifetime. An important consequence of these diverse harmonisation initiatives has been the emergence of a new reservoir of knowledge, experience, and expertise that is crucial to share with the biobanking community and which paves the way for the next phase of harmonisation objectives. PHOEBE has been committed to mobilising this information within the biobanking community for the purpose of maximising the scientific value, use and utility of our biomolecular resources. To help in this endeavour, PHOEBE has been actively engaged in or leading key meetings, conferences, strategy building initiatives, biobanking projects and training. We have produced valuable reports and recommendations, guidelines, planned international conferences to promote much needed dialogue within the community and between stakeholders, PHOEBE has played an instrumental role to enhance cross-talk and collaboration between the next wave of biobanking projects and thereby have 'passed the coordination torch' forward.

One of the largest international biobanking events in 2009 focused on cutting edge issues in harmonisation due to the direct result of PHOEBE fulfilling a project deliverable. This conference, planned around the grand theme 'Harmonising biobank research: Maximising value-maximising use', was held in Brussels on 25-27 March 2009. More than 250 people from over 35 countries attended the conference representing a diverse range of scientific and professional expertise in the various disciplines critical to biobanking. The conference provided a much-needed forum to understand the current state of play, provide a forum for information exchange, and engage in renewed thinking about the most pressing issues. PHOEBE co-organised the conference with the Public Population Project in Genomics (P3G) and the BBMRI. All three of these initiatives worked in tandem during the course of PHOEBE to further biobank science and research.

Discussions at the conference constructively identified the next generation of challenges that have emerged in the wake of the progress already made. Specifically, the session dedicated to the topic of 'building an international biobanking community', reiterated concerns from the November 2008 meeting of 25 EU-funded biobanking projects which identified biobank sustainability and harmonisation as top strategic priorities. PHOEBE has been following up on this mandate through the planned issuance of a White Paper.

As illustrated by the final PHOEBE conference, the collective work performed by PHOEBE impacted biobank harmonisation far beyond the scope of the original aim and formal deliverables. Through our project endeavours, we have identified, and in some cases begun to address, significant new developments that emerged in the biobanking arena during the course of PHOEBE. Primary among these are issues of biobank sustainability and targeted areas of harmonisation. These were discussed in detail in our report from the November 2008 meeting of 25 EU funded biobanking projects. This meeting provided the opportunity to share achievements; identify obstacles, potential solutions, and areas for cross-project collaboration; and discuss critical issues, urgent needs, and practical next steps. PHOEBE and BBMRI were instrumental in co-coordinating this meeting with the European Commission (EC). Our report summarised priorities identified for the future; chief among these were issues of sustainability, phenotype harmonisation and continued targeting of specific areas needed to achieve interoperabililty. We also emphasised that realising these goals will necessitate sponsors to interface with each other to ensure a global response to the international need for a harmonised network of biobanks.