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Questions. What is the union? Who might join the union? What will EBBU do? Why do we need a union? Why now? Why put initial focus on disease-based collections? Why do population biobanks have a key role? What role for the European Commission? Why is it UDBN making this proposal?.

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Questions

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  1. Questions • What is the union? • Who might join the union? • What will EBBU do? • Why do we need a union? • Why now? • Why put initial focus on disease-based collections? • Why do population biobanks have a key role? • What role for the European Commission? • Why is it UDBN making this proposal?

  2. What is the union? EBBU - a post-genomic community resource research infrastructure

  3. A smaller version already exists Steering Committee Medical Research Council Research and development coordination Sample and data operations coordination CIGMR S&D ops CIGMR Sample R&D ECACC Admin 13 collectors S&D ops ECACC Admin Organogram of the UK DNA Banking Network

  4. Who might join the union? • Existing and new Network of Excellence and Integrated Project collectors • National (EU and other) and regional population and case-based biobanks • Appropriate SME’s • Potential members: BioBabel; BioSapiens; CANCERDEGRADOME; COGENE; Danubiobank; DIABESITY; EMAS; Embrace; EPIC; EPIGENOME; Epistem; Estonian Genome Project; EUROGENTEST; EUROSCA; Eurospan; EVGN; Finnish Genome Project; GENDEP; GenomEUtwin; GeOSept; HuGENet; Humgeri; Hungarian Genome Project; KoraGen; Latvian Genome Project; MolDiag-Paca; MolPAGE; NEWMOOD; Norwegian Biobank; PHOEBE; Spanish Biobank; Swedish Genome Project; TEMBLOR; TRANS-BIG; UK Biobank (for illustrative purposes only)

  5. What will EBBU do? • EBBU is not a collaboration for investigation. It does not specify research topics, study design or data analysis. • EBBU is a framework for collaboration. It will implement sample harmonisation and data harmonisation (on demand). This will: • end sample bottlenecks • release clinical investigators, geneticists and epidemiologists to focus on core competencies • cut costs of collection start-up and maintenance • speed up initiation and development of collaborations • uphold principle of free enquiry • provide ‘starter packs’ to develop post-genome genetics

  6. Starter packs • Hardware • Freezer • Liquid handling robot • Server + terminals • Software • Open source programs suite + CoMS

  7. Why do we need a union? • Geneticists need large collections to perform GWA studies • Geneticists need further collections to replicate and/or extend emerging GWA results on common complex diseases • Epidemiologists need access to cohorts larger than any single national biobank • In other words, we need an efficient mechanism of collation. As well as of collection.

  8. Why now? • HGP and HapMap completion puts genetic analysis of complex disease at the new frontier of genetics. • GWA studies are underway for a first wave of diseases. But the second wave starts now. • We need immediately to: • collate /collect • existing /new • sample and data • sets / subsets

  9. Why put initial focus on disease-based collections? • Because they are: • Timely • Good starting point for new collectors and funders • Smaller, quicker, cheaper than population-based collections • Nonetheless, EBBU is extendable to: • EU-wide population-based studies (e.g. a “Peoples of Europe” multi-node control population collection) • Linking EU registries

  10. Why do population biobanks have a key role? • Existing biobank infrastructures are suited to • act as nodes for EBBU • provide good environment for R&D in study design, accrual and analysis • aid transition of case series to cohort studies • Harmonisation between population biobanks is implicit if they are EBBU nodes

  11. What role for the EC? • Conditions of new and current funding to collectors need to include proviso that: • specific steps are taken to ensure open access to samples as well as data • these steps to include discussions with EBBU

  12. Why ismaking this proposal? I • UDBN unites collectors in • Age-related macular degeneration; colorectal cancer; hypertension; Parkinson’s disease; multiple sclerosis; asthma and eczema; acute coronary event; Type 2 diabetes; unipolar depression; glomerulonephritis; breast cancer; Alzheimer’s disease; VUR ... • UDBN is a community resource project • sample and data management under ISO9001-2000 delivered through two research infrastructures • the world’s first scientific dating agency

  13. I have support from the Midas Foundation and I would like to collaborate with you. I have read your recent papers and viewed your summary data. There is a need to replicate and extend your study using a subset of my own samples and overlapping data. I have support from the Midas Foundation and I would like to collaborate with you. I have read your recent papers and viewed your summary data. There is a need to replicate and extend your study using a subset of my own samples and overlapping data. UDBN collaboration management

  14. CoMS Data comes from many Collections

  15. European BioBanking Union

  16. Why is it UDBN making this proposal? II • UDBN embraces key principles for EBBU: • Collectors in UDBN are funded with the proviso that samples be deposited in a DNA bank • Access to high-level data (phenotypes and genotypes) is restricted to bona fide investigators • Access to samples and raw data is via collaboration (to ensure retention of trust of subjects)

  17. Why is it UDBN making this proposal? III • UDBN collectors need to replicate • Evidence that UDBN is scalable to EU • A pilot project is underway with an EU partner to: • roll out CoMS • link this partner to UDBN • harmonise DNA quantitation (between these 2 sites and 18 others - under P3G umbrella) • Expressions of interest from Finland, Estonia, Sweden, Norway, France, Malta, Czech, Hungary, Israel

  18. Acknowledgements UDBN staff:Kate Dixon; Andrew Platt; Jay Brown; Emma Davis; Kate Therburn; John-Paul Allen; Hilary Corless UDBN partners: • Shomi Bhattacharya IoO • Harry Campbell Edinburgh • Mark Caulfield St Barts • Carl Clarke Birmingham • Alastair Compston Cambridge • Bill Cookson Oxford • Malcolm Dunlop Edinburgh • Judith Goodship Newcastle • Alistair Hall Leeds • Andrew Hattersley Exeter • David Lewis ECACC • Mark McCarthy Oxford Peter McGuffin IoPsy Miriam Moffatt Oxford Karen Morrison Birmingham Pat Munroe St Barts Bill Ollier Manchester Michael Owen Cardiff Andy Rees Aberdeen Nilesh J. Samani Leicester Ellen Solomon King’s Andrew Webster IoO Julie Williams Cardiff Martin YuilleManchester Simon Pullum (Azura) Colchester To express interest: contactMartin.Yuille@manchester.ac.uk

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