The project has maintained some of Europe’s largest biobanks and most well controlled registries in regular networking meeting to share competences and resources and promote joint studies and quality improvements.
The biobank databases have been linked with population registries for updating on vital status and estimation of population representativeness of data as well as with nationwide cancer registries to generate cancer incidences and tables with total number of prospectively occurring cancer cases in all participating biobanks.
A statistical analysis centre has provided a service and establishment of a standardised and robust method for study design, selection of random eligible controls, generation of study files and pick-up lists, code-keeping and statistical analysis of joint biobank-based studies.
The Good Biobanking Practise system has resulted in traceable quality of samples and greatly improved efficiency in management and coordination. As an example, the statistics in terms of numbers of samples stored as well as number of samples delivered has greatly increased, resulting in a scientific output with now >100 publications. The speed of development of quality standards and dissemination throughout the network is increased by the building of a joint internet-based quality manual system.
As use of biobanks is critically dependent on accurate linkages with comprehensive and high quality health data registries, cancer registration and the use of registry data is also being Quality Assured. Quality Assurance systems for completeness and accuracy of cancer registration as well as for linkage of registry data and pathology data are now established.
A comprehensive linkage of the Swedish cancer registry and multigeneration registry has enabled a systematic assessment of familial risks for many cancers, including colorectal, prostate, cervical, bone and testicular cancers and non-Hodgkin lymphoma and childhood leukemia. Cancer risks were also assessed in twins and in offspring of lung cancer parents with some mechanistic inferences. These data now form the basis for an epidemiologically focused and thus maximally efficient investigation of the genes determining genetic susceptibility of cancer.
A number of very large-scale association studies within the participating biobanks with familial or sporadic breast cancer and colon cancer have been performed evaluating candidate SNPs in signaling pathways, including the GH-IGF, metastasis, cell signaling and apoptosis pathways and whole-genome analyses are underway.
A comprehensive linkage of maternity cohort biobanks with cancer registries has identified a uniquely large study base (>1000 cases and 2000000 controls) for studies of intrauterine exposures and risk of childhood leukemia. A series of studies evaluating candidate exposures have already been completed and found maternal Epstein-Barr virus infection to associate with increased risk of childhood leukemia. High throughput technology platforms are being streamlined to allow for screening for both antibodies as well as genomes of microbial agents.
An ethical advisory board work has greatly improved the ethical awareness of the entire network and a series of analyses of the ethical issues of practical relevance for the scientific work (e.g. on the implications of broad informed consent) have been prominently published.
Finally, the first formal Graduate School in Biobank-based Epidemiology has been established as a part of the European Program in Public health and Epidemiology, with the first students starting in autumn 2005 and expected to complete their doctoral degrees in 2008. The second class of students will be starting in autumn of 2007. A series of open, internationally announced, CCPRB courses have been given, including Introduction to Molecular Epidemiology, Good Laboratory Practice in Biobanking, Science of Registry Linkages, Biobanking Ethics, Longitudinal Studies, Meta-analysis, Genetic Epidemiology and a CCPRB Biobank Conference.
Expected end results and impact
The European Quality Standards work is expected to both provide a greatly improved and more reliable infrastructure to harness the power of linking biobanks and health data registries for exploiting the advances in high throughput technologies. The strong participation of clinical biobanks is expected to improve the efficiency in translating discoveries of biomarkers and new etiologic factors into improved etiologic understanding, improved prevention and improved treatment of cancer.
The Network aims to have demonstrated at least one proof-of-concept of the power of population-based registries and biobanks to result in practical advances in the respective areas of cancer prevention, cancer treatment and discovery and validation of new genetic and environmental causes of cancer.
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