Population Biobank Studies A Practical Guide
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| Author | : Zhengming Chen |
| Publisher | : Springer Nature |
| Total Pages | : 212 |
| Release | : 2020-12-09 |
| Genre | : Medical |
| ISBN | : 9811576661 |
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.
| Author | : Alan J. Silman |
| Publisher | : Oxford University Press |
| Total Pages | : 305 |
| Release | : 2018-10-18 |
| Genre | : Medical |
| ISBN | : 0192546317 |
To successfully conduct an epidemiological study, academic subject knowledge must be combined with careful consideration of the practical elements involved. From an academic perspective, insights into the basis of epidemiology, the concepts behind how we study diseases, and the challenges and limitations of the results that emerge are prioritised. However, the success of the academic analysis depends on how, when, and where the data used is collected. Epidemiological Studies: A Practical Guide focuses on the practical challenges of epidemiological data collection. Essential topics, such as how to choose the population to study, how to maximise participation and retention, and how to frame questions so that subjects provide the information required, are the core of the material presented. The book explains the skills needed to conduct a study where data is collected and presented accurately, and in appropriate formats. In addition to presenting a step-by-step guide to epidemiological investigations, the chapters in the book are accompanied by examples of how to phrase the letters and forms needed for each stage of conducting a study. Focusing on measurement, study designs, statistics, methodological issues, and key skills, the book provides a valuable background to epidemiological study. With detailed tables and figures, a clear chapter outline, and a straightforward index, the information presented is easily accessible and can quickly be applied to the reader's own work. Extensively revised, this new edition includes updates on case-crossover, Mendelian randomisation, and case-cohort. New chapters have been added to reflect the areas a student is now likely to encounter in an introductory epidemiological course, such as evidence synthesis, use of routine data, association or causation, feasibility, and pilot studies. Epidemiological Studies: A Practical Guide is ideal for students in epidemiology, public health, health research, and health services research. It is also highly relevant to post-graduate research students, and early stage clinical and non-clinical researchers.
| Author | : Daisuke Aoki |
| Publisher | : Springer Nature |
| Total Pages | : 147 |
| Release | : 2023-12-02 |
| Genre | : Medical |
| ISBN | : 981995231X |
This book shares cutting-edge evidence on Hereditary Breast and Ovarian Cancer (HBOC) treatment, delivering facts on breast cancer, gynecologic oncology, and basic research to contribute to clinicians' practices. Each chapter presents the latest clinical techniques, basic experimental results, and the best-chosen research findings. The book is based on the works presented at the Japanese Organization of Hereditary Brest and Ovarian Cancer (JOHBOC) and a special chapter delivers a study based on the extensive data from the Japanese HBOC patients registered in the society's database, presenting novel evidence for further advancement in the field. The practice for HBOC has been rapidly increasing due to the clinical development of poly(ADP-ribose) polymerase inhibitors and the spread of companion diagnostics. In addition, the insurance coverage of a part of HBOC treatment raised social awareness in Japan, and the book illustrates not only clinical efforts but also issues related to the social system and the efforts of the association of related organizations. Hereditary Breast and Ovarian Cancer – Annual meeting of JOHBOC will be of interest to breast surgeons, obstetricians and gynecologists, pancreatic cancer surgeons, and urologists engaged in HBOC treatment through the implementation of companion diagnostics for PARP inhibitors administration. Also, physicians occupied in genetic medicine who perform genetic testing and medical staff practicing HBOC will find this book insightful. It is also for HBOC patients and their families, medical administrators in the social system of HBOC practice. Editors and authors hope to contribute to the equalization and widespread of HBOC practice and serve as a foundation for future advances in the disease's treatment and medical practice.
| Author | : Jane Reichel |
| Publisher | : Springer Nature |
| Total Pages | : 432 |
| Release | : 2021 |
| Genre | : Biobanks |
| ISBN | : 3030493881 |
Part I Setting the scene -- Introduction: Individual rights, the public interest and biobank research 4000 (8) -- Genetic data and privacy protection -- Part II GDPR and European responses -- Biobank governance and the impact of the GDPR on the regulation of biobank research -- Controller' and processor's responsibilities in biobank research under GDPR -- Individual rights in biobank research under GDPR -- Safeguards and derogations relating to processing for archiving purposes in the scientific purposes: Article 89 analysis for biobank research -- A Pan-European analysis of Article 89 implementation and national biobank research regulations -- EEA, Switzerland analysis of GDPR requirements and national biobank research regulations -- Part III National insights in biobank regulatory frameworks -- Selected 10-15 countries for reports: Germany -- Greece -- France -- Finland -- Sweden -- United Kingdom -- Part IV Conclusions -- Reflections on individual rights, the public interest and biobank research, ramifications and ways forward. .
| Author | : National Research Council |
| Publisher | : National Academies Press |
| Total Pages | : 124 |
| Release | : 2010-10-02 |
| Genre | : Computers |
| ISBN | : 0309157064 |
Recent years have seen a growing tendency for social scientists to collect biological specimens such as blood, urine, and saliva as part of large-scale household surveys. By combining biological and social data, scientists are opening up new fields of inquiry and are able for the first time to address many new questions and connections. But including biospecimens in social surveys also adds a great deal of complexity and cost to the investigator's task. Along with the usual concerns about informed consent, privacy issues, and the best ways to collect, store, and share data, researchers now face a variety of issues that are much less familiar or that appear in a new light. In particular, collecting and storing human biological materials for use in social science research raises additional legal, ethical, and social issues, as well as practical issues related to the storage, retrieval, and sharing of data. For example, acquiring biological data and linking them to social science databases requires a more complex informed consent process, the development of a biorepository, the establishment of data sharing policies, and the creation of a process for deciding how the data are going to be shared and used for secondary analysis-all of which add cost to a survey and require additional time and attention from the investigators. These issues also are likely to be unfamiliar to social scientists who have not worked with biological specimens in the past. Adding to the attraction of collecting biospecimens but also to the complexity of sharing and protecting the data is the fact that this is an era of incredibly rapid gains in our understanding of complex biological and physiological phenomena. Thus the tradeoffs between the risks and opportunities of expanding access to research data are constantly changing. Conducting Biosocial Surveys offers findings and recommendations concerning the best approaches to the collection, storage, use, and sharing of biospecimens gathered in social science surveys and the digital representations of biological data derived therefrom. It is aimed at researchers interested in carrying out such surveys, their institutions, and their funding agencies.
| Author | : Robert E Hoyt |
| Publisher | : Lulu.com |
| Total Pages | : 492 |
| Release | : 2012 |
| Genre | : Medical |
| ISBN | : 1105437558 |
Health Informatics (HI) focuses on the application of information technology (IT) to the field of medicine to improve individual and population healthcare delivery, education and research. This extensively updated fifth edition reflects the current knowledge in Health Informatics and provides learning objectives, key points, case studies and references. Topics include: HI Overview; Healthcare Data, Information, and Knowledge; Electronic Health Records, Practice Management Systems; Health Information Exchange; Data Standards; Architectures of Information Systems;Health Information Privacy and Security; HI Ethics; Consumer HI; Mobile Technology; Online Medical Resources; Search Engines; Evidence-Based Medicine and Clinical Practice Guidelines; Disease Management and Registries; Quality Improvement Strategies; Patient Safety; Electronic Prescribing; Telemedicine; Picture Archiving and Communication Systems; Bioinformatics; Public HI; E-Research. Available as a printed copy and E-book.
| Author | : Roongroj Bhidayasiri |
| Publisher | : Elsevier |
| Total Pages | : 366 |
| Release | : 2024-01-20 |
| Genre | : Medical |
| ISBN | : 0323994954 |
Over the past few years, there have been fundamental changes in the diagnosing and treating patients with chronic diseases, significantly affecting management of neurological movement disorders. In addition, the health and fitness sector developed several devices to better classify, track, and potentially treat chronic diseases. Both handling and interpreting these large datasets has been revolutionized, by machine and deep learning approaches, leading to new and more effective therapies, resulting in longer survival rates. Handbook of Digital Technologies in Movement Disorders aims to unite these factors to provide a comprehensive guide to patient focused treatments for movement disorders. This book is divided into five distinct sections, starting with an introduction to digital technologies, concepts, and terminologies. The following section reviews various perspectives on technology in movement disorders, including patient and medical professionals. The third section presents technologies used in detecting, measuring progression, and determining response to treatments. This is followed by reviewing the technology used in various treatments of movement disorders including assistive and robotic technologies. Finally, the last section examines the challenges with technology including privacy and other ethical issues. - Reviews different stakeholders' perspectives on technology in movement disorders - Presents technological advancements for diagnosing, monitoring, and managing Parkinson's disease - Discusses challenges with implementing technology into treatment
| Author | : Nils Hoppe |
| Publisher | : Universitätsverlag Göttingen |
| Total Pages | : 183 |
| Release | : 2011 |
| Genre | : Medical |
| ISBN | : 3863950313 |
"Human tissue and biobank research is of increasing importance for understanding the causes of widespread diseases and developing effective therapies. However, while the success of biobank research depends on the availability of a large number of samples and the consolidation of collections across country borders is very desirable from the perspective of researchers, the legal and ethical requirements for the procurement, storage and use of human tissue samples are rather heterogeneous across different countries. Moreover, the lack of comprehensive supranational regulation on human tissue and biobanking can be seen as posing a serious threat to transnational biomedical research. Against this background, it was one of the aims of the EU-funded Tiss.EU project ('Evaluation of Legislation and Related Guidelines on the Procurement, Storage and Transfer of Human Tissues and Cells in the European Union--an Evidence-Based Impact Analysis') to analyse the ethical and legal regulation of human tissue and biobank research across the 27 European Member States plus Switzerland. The results of nine international workshops and three conferences are gathered in this volume. While the country reports evaluate the implementation of ethical and legal guidelines at a national level, point out their strengths and deficits, and, where required, create an evidence base for the revision of said legislation, the conference reports address more general ethical and legal issues in this field. The volume is completed by a final presentation of project's results"--Publisher's description
| Author | : Neal D. Goldstein |
| Publisher | : CRC Press |
| Total Pages | : 436 |
| Release | : 2023-07-25 |
| Genre | : Mathematics |
| ISBN | : 1000908887 |
In an age when electronic health records (EHRs) are an increasingly important source of data, this essential textbook provides both practical and theoretical guidance to researchers conducting epidemiological or clinical analysis through EHRs. Split into three parts, the book covers the research journey from start to finish. Part 1 focuses on the challenges inherent when working with EHRs, from access to data management, and raising issues such as completeness and accuracy which impact the validity of any research project. Part 2 examines the core research process itself, with chapters on research design, sampling, and analysis, as well as emerging methodological techniques. Part 3 demonstrates how EHR research can be made meaningful, from presentation to publication, and includes how findings can be applied to real-world issues of public health. Supported by case studies throughout, and applicable across a range of research software programs (including R, SPSS, and SAS), this is the ideal text for students and researchers engaging with EHRs across epidemiological and clinical research.
| Author | : Robert E. Hoyt |
| Publisher | : Lulu.com |
| Total Pages | : 535 |
| Release | : 2014 |
| Genre | : Computers |
| ISBN | : 1304791106 |
Health Informatics (HI) focuses on the application of Information Technology (IT) to the field of medicine to improve individual and population healthcare delivery, education and research. This extensively updated fifth edition reflects the current knowledge in Health Informatics and provides learning objectives, key points, case studies and references.
