Overview

Large prospective cohorts and biobanks are ideal models for defining disease burden in a population and for launching studies to examine the many genetic and environmental factors that contribute to disease, paving the way for personalized medicine. Advantages of large-scale approaches over smaller scale or retrospective study designs include greater generalizability of the research findings and efficiencies in time and resources because a single large, well defined cohort can be built to address multiple research questions within a single research framework.

The U.K. Biobank is a large-scale national resource initiated in 2004 to assess trends in disease burden and examine genetic and environmental risk factors for specific diseases. The approach used by the Biobank has enabled its leaders to achieve exceptional efficiencies in recruitment, assessment and record linkage. By spring of 2010, the UK Biobank will have reached its goal of 500,000 participants and begin closing down its field centers. To explore this model while it was still actively in place, the NIH convened a symposium to hear first hand from the leadership of the U.K. Biobank, and from leaders of other large national and international cohort studies and biobanks, about novel study designs, lessons learned, and opportunities that may inform NIH programs.

The NIH hosted the New Models for Large Prospective Studies symposium on January 22, 2010 in Bethesda, Maryland to:

• Hear from national and international leaders and funders of large cohort studies and biobanks, in particular the UK Biobank, about novel study designs; approaches to achieve efficiencies in recruitment, examination, and sample collection and handling; strategies to address consent and confidentiality; and lessons learned from pilot studies and full-scale implementations; and
• Identify areas of opportunity and collaboration, and identify possible next steps.

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