This book describes some of the key epidemiological principles,
scientific approaches and quality assurance frameworks required to
design and conduct biobank studies in various settings. Using
examples from contemporary biobanks, the book addresses the design
features and practical procedures needed in order to launch and
manage biobank studies, including consent and regulatory approval,
the organisation of field work, management of data and biological
samples, follow-up and verification of disease outcomes,
development of IT systems for data collection, quality assurance
and study management. Over the last two decades, several large
biobank studies have been initiated in different populations,
intended to greatly enhance the development of precision medicine.
Contemporary biobank studies are extremely large and complex, and
involve several decades of follow-up. Such studies pose major
challenges in terms of ensuring rapid recruitment, obtaining
high-quality data, minimising loss to follow-up, reliably
classifying disease outcomes, and optimising the use of the
biological samples collected. In this regard, the key to success
lies not in planning the perfect study, but in planning the most
appropriate, reliable, sustainable and future-proof study given the
practical constraints of available resources, time and capacity.
The authors of this handbook are epidemiologists, clinicians,
software engineers, and laboratory and data scientists with
extensive experience in conducting large biobank studies. The eight
chapters can be read separately or together, and provide readers
with essential information on how to design, implement and manage
these studies. The state-of-the-art, innovative and scalable
approaches and methodologies presented here are intended to
stimulate the development of further population-based and
hospital-based biobank studies in diverse populations.
General
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