Presentations from the conference "Harmonising Biobank Research: Maximising Value - Maximising Use

Below are the sessions presented at the conference "Harmonising Biobank Research: Maximising Value - Maximising Use held in Brussels on March 25th - 27th. Within each session you can find the presentations approved by the author to be released.

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Session 1 - Phenotype Harmonisation

[READMORE][/READMORE] [EDIT][Edit][/EDIT] From Harmonization to Standardization, Just a Step?
Dr. Isabel Fortier, Director Research and Development, P3G, Canada

Accelerating and Improving Research through Standardization
Peter Geary, Chief Executive Officer, Canadian Tumour Repository Network and Chair of the Marble Arch International Working Group on Human Specimen Biobanking for Research Purposes, Canada

PhenX Measures
Dr. Carol M. Hamilton, Director of Bioinformatics, RTI International, PhenX Principal Investigator, USA

Concept Web Technologies to Harmonize Dispersed and Ambiguous Information
Dr. Barend Mons, Biosemantics Group, Department of Medical Informatics, Erasmus Medical Center, Rotterdam and Department of Human Genetics, Leiden University Medical Center, The Netherlands

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Session II - Making the Most of Bioebank Data via the Internet

[READMORE][/READMORE] [EDIT][Edit][/EDIT] Bridging the 'Internet-Biobanking' Gap: Modular Resources and Researcher IDs
Professor Anthony J. Brookes, Department of Genetics, University of Leicester, UK

Anonymous Bosh: Identity, Authority and Reputation in a Mashed-Up World
Geoffrey Bilder, Director of Strategic Initiatives, CrossRef, UK

Tools for Multi-Center Data Harmonisation and Analyses
Dr. Maria Krestyaninova, European Bioinformatics Institute, EMBL-EBI, Hinxton, UK

Tracing Biological Collections: an Incentive for Collaboration
Dr. Francine Kauffmann, Inserm U780, Epidemiology and Biostatistics, France

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Session III – Isolated Populations

[READMORE][/READMORE] [EDIT][Edit][/EDIT] Complex and Quantitative Traits: Definition of a General Picture from The Study of a Network of Isolated Populations
Professor Paolo Gasparini, University of Trieste/IRCCS-Burlo Garofolo, Italy

Consenting in Isolated Population Biobanks: Individual Autonomy vs. Intersubjective Responsibility
Deborah Mascalzoni, EURAC Bolzano, Italy

Genetic Structure of Some of the Isolated and Non-Isolated Populations in Europe
Professor Andres Metspalu, Director of the Estonian Genome Project of the University of Tartu, Estonia

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Parallel Session IV: From Data to Statistical Analysis

[READMORE][/READMORE] [EDIT][Edit][/EDIT] eInfrastructures in the Updated ESFRI Roadmap
Professor Juni Palmgren, Department of Medical Epidemiology and Biostatistics, Karolinska Institutet and Department of Mathematical Statistics, Stockholm University, Sweden

From Data to Statistical Analyses: A Lesson and a Vision from the Domain of Lipids and CHD in ENGAGE
Dr. Samuli Ripatti, Institute for Molecular Medicine, University of Helsinki, Finland

Statistical and Bioinformatical Challenges in the Analysis of Genome-Wide Association Data
Dr. Yurii Aulchenko, Department of Epidemiology and Biostatistics, Erasmus MC, University Medical Center, Rotterdam, The Netherlands

From Data to Statistical Analysis: Explaining Genetic Heritability by Interaction Analysis?
Dr. Kristel Van Steen, Montefiore Institute, Bioinformatics, Biometry and Statistics,
University of Liège, Belgium

EUROGENE – The First Pan-European Learning Service Dedicated to Genetic Medicine
Professor Heike Bickeböller, Department of Genetic Epidemiology, University of Göttingen, Medical School, Germany and Petr Knoth, Researcher and Doctoral Student, Knowledge Media Institute, The Open University, UK

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Parallel Session V: Recontact and Reconsent

[READMORE][/READMORE] [EDIT][Edit][/EDIT] Deconstructing and Reconstructing a Terminology
Dr. Anne Cambon-Thomsen, Director of Research, CNRS, INSERM U558, France and Professor Bartha Maria Knoppers, University of Montreal, Canada

UK Biobank’s Recontact and Reconsent Policy
Dr. Jane Kaye, Wellcome Trust Fellow, Ethox Centre, University of Oxford, UK

Recontact and Reconsent in Estonia
Professor Andres Metspalu, Director of the Estonian Genome Project of the University of Tartu, Estonia

French Policies and Examples Regarding Re-Contact and Re-Consent
Mrs. Emanuelle Rial-Sebbag, INSERM, France

Recontact and Reconsent in CARTaGENE
Ms. Karine Bédard, CaRTaGENE, Canada

Public Perspectives on Recontact and Reconsent
Dr. Klaus Hoeyer, Institute of Public Health,
University of Copenhagen, Denmark

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Session VI – Data Sharing: Various Models - Same Science?

[READMORE][/READMORE] [EDIT][Edit][/EDIT] The European Genotype Archive Data Access Model
Dr. Mario Caccamo, European Genotype Archive, EMBL-EBI, UK

dbGaP as a Model for Sharing GWAS Data
Dr. Rebekah Rasooly, Program Director for the Genetics and Genomics Program, National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), National Institutes of Health, USA

Data Sharing: Can We Align The Needs of Science and the Needs of Individual Scientists?
Professor Paul Burton, University of Leicester, UK

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Session VII – Practical Experiences with Clinical Biobanks

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Clinical Population-Based Biobanks: Experiences of Building and Scientific Use
Professor Joakim Dillner, Department of Laboratory Medicine, Lund University, Sweden

Building a Tissue Bank Network
Peter Geary, Chief Executive Officer, Canadian Tumour Repository Network and Chair of the Marble Arch International Working Group on Human Specimen Biobanking for Research Purposes, Canada

Practical Experiences with Clinical Biobanks: Lessons from Down Under
Professor Lyle Palmer, Foundation Chair in Genetic Epidemiology and Director of the Centre for Genetic Epidemiology and Biostatistics, University of Western Australia, Australia

Cervical Cytology Biobanks as a Resource for Molecular Epidemiology
Dr. Marc Arbyn, National Centre for Cancer Control, Scientific Institute of Public Health, Belgium

Bridging Population Biobanks and Disease Based Post-Mortem Biobanks - Yes, We Can
Dr. Rivka Ravid, Netherlands Institute for Neurosciences, Dutch Royal Academy of Sciences, The Netherlands

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Key-note speakers

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Harmonisation: What Does it Mean in Ethics?
Dr. Ruth Chadwick, Director of the ESRC, Cesagen, Cardiff University, UK

Pooling Data of Isolated Populations: Prospects and Limitations
Professor Cornelia van Duijn, Department of Epidemiology & Biostatistics, Erasmus University Medical School, The Netherlands

Sequencing 1000 Genomes to Provide a Deep Catalogue of Human Genetic Variation
Dr. Richard Durbin, Principal Investigator, Wellcome Trust Sanger Institute, UK

Thinking Big: Collaboration and Data-Sharing, The New Genetics, and Genes Influencing Diabetes and Obesity
Professor Mark McCarthy, Oxford Centre for Diabetes, Endocrinology and Metabolism, UK

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