In recent decades, much has been written about the scientific purposes and promise of large biobank studies but very little about the practical aspects of delivering them effectively. Led by Professor Zhengming Chen, the CKB team has addressed this by producing a clear practical guide for planning, conducting and managing large biobank studies. Population Biobank Studies: A Practical Guide, published by Springer in 2021, is a useful reference for both those studying epidemiology and those conducting population health research themselves.
The book draws on the uniquely rich decade-long experience from the CKB, one of the largest biobank studies in the world. Although it grew out of the 20th century tradition of prospective studies and was based on similar underlying design principles, the CKB went far beyond previous cohort studies in its size, methods, complexity, and quality assurance framework, taking advantage of information technologies, health record linkages, molecular biology, and genetics that became possible in the 21st century. The authors (all members of a team of epidemiologists, clinicians, geneticists, software engineers, and laboratory and data scientists currently working on the CKB in Oxford) share their first-hand experience in the planning, design, conduct, and management of contemporary biobank studies.
For large biobank studies, the key to success lies perhaps not in planning for a perfect study, but rather in planning the most reliable, sustainable, and future-proof study within the practical constraints of the available resources and capacity. The book aims to describe the key components necessary to establish and manage large prospective biobank studies, including the thought process, procedures, and quality assurance frameworks for the optimal design, conduct, and management of such studies. With a foreword by Professor Sir Richard Peto, the book’s eight chapters address:
- an overview of principles and methods in epidemiological studies;
- the design and management of biobank studies;
- organisation and management of field work;
- collection and management of biological samples;
- long-term follow-up for health outcomes;
- verification and adjudication of disease outcomes;
- development and application of IT systems;
- data management, curation and sharing.
Key issues such as questionnaire design, standard operating procedures, ethics and regulatory approval, biological samples, best practice in software development and data protection and sharing are presented from different, albeit interrelated, perspectives in several chapters.
Using examples mainly from the CKB, the book provides many practical case studies of state-of-the-art, cost-effective, and scalable methods necessary for establishing large biobanks in different settings.
All the major biobank studies in the world now communicate with each other, sharing ideas, data, and results. This book will aid the process of sharing methods and will help stimulate further development of large population- and hospital-based biobank studies across different populations.
The rapid technological development in genomics will soon enable whole genome sequencing of all study participants in biobank studies, along with multi-omics assays of several thousands of proteins and small molecules. This will generate exceptionally large and complex biological datasets, over and above those collected and generated using the conventional approaches described in the book. Novel solutions for managing, sharing and analysing such datasets are needed, to take advantages of recent development in data science and information technology, such as machine learning and cloud computing.