Project Description

The ultimate aim of the project is to establish and maintain a cost-effective and “harmonised” network of population-based biobanks and longitudinal cohort studies across Europe and in Canada. This harmonisation aims 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 are necessarily rigorous, often differ between nations and alter with time as biomedical science advances and societal interests and concerns change and mature.

The project will build upon pre-existing experience under the COGENE and P3G (Public Population Project in Genomics) initiatives and within the GenomEUtwin study. The project has the following objectives:

To identify and describe, in a standardized form, large pre-existing population-based biobanks and longitudinal cohort studies in Europe. Particular emphasis will be placed on studies that can contribute substantially to coordinated investigations of the genetic and environmental determinants of complex diseases.
To identify new biobanking opportunities within Europe. This will include a particular focus on genetically isolated populations, and we will establish standard criteria for selection and collection of data and samples from these populations.
To review current best practice for Biobank Information Management Systems. Key issues of harmonisation in relation to the management of large and complex databases for biobanks will be explored with a focus on efficient technologies, high level programming and the development of flexible communication engines that support reliable, efficient and secure communication between biobanks.
To create an operational infrastructure for the evaluation of ongoing large-scale genotyping efforts in population cohorts. This will provide a natural forum for expert opinions regarding marker selection, genotyping methods, quality assessment steps, database structure and analysis of the produced genotypes.
To lay the groundwork for a harmonised approach to the assessment of a wide range of complex phenotypes and life-style exposures. One complex phenotype, major (unipolar) depression, will be worked up in full, as an exemplar of what will ultimately be required for all phenotypes and exposures.
To establish ethical-legal and governance criteria consistent with the international norms and European practices that will enable data and sample sharing for research purposes.
To integrate collected European and Canadian expertise in relation to the statistical challenges that face us in study design and analysis, data synthesis across studies, and in creating general purpose platforms for developing and implementing mathematical models in genetic epidemiology and genetic statistics.

A cost-effective and “harmonised” network of population-based biobanks and longitudinal cohort studies across Europe and in Canada would support the study of a wide range of disease-environment-lifestyle-genetic relationships with much greater power than previously possible. It would enable studies of the genetic and non-genetic determinants of the onset and natural history of established diseases. This infrastructure, and new information generated from it, would create invaluable opportunities for research into prevention, diagnosis and management of a wide range of important complex diseases with major implications for public health throughout the world.

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