The PhenX (consensus measures for Phenotypes and eXposures) Toolkit offers well-established, broadly validated measures of phenotypes and exposures relevant to investigators in human genomics, epidemiology, and biomedical research. This methods report describes the infrastructure and processes used to develop the content and features of the Toolkit. The PhenX consensus process is robust, yet flexible, as evidenced by its application to a range of research domains. During the initial phase of PhenX from March 2008 through April 2010, working groups of content experts addressed 21 research domains and selected 295 measures for the Toolkit. The PhenX Steering Committee prioritized and defined the scope of the domains and guided the consensus process with input from liaisons representing the National Institutes of Health. After the 21 domains were completed, another project to add breadth and depth to the Toolkit for substance abuse and addiction (SAA) research served to validate the consensus process. With the support of the SAA Scientific Panel to define the scope for one core and six specialty collections and SAA working groups to select measures, the PhenX project team added 44 measures to the Toolkit in 2012. The PhenX Toolkit, now being used by more than 1,000 researchers, offers a catalog of measures, supporting documentation, and tools for collaborative research. It used a consensus process that can serve as a template for investigators who are considering a similar approach.

A challenge in conducting pediatric research is selecting reliable, valid measurement protocols, across a range of domains, that are appropriate for the developmental level of the study population. The purpose of this report is to introduce the research community to the Pediatric Development Research Domain of the National Institutes of Health (NIH)–supported PhenX Toolkit (consensus measures for Phenotypes and eXposures). The PhenX Toolkit provides a catalog of recommended measurement protocols to address a wide range of research topics that are suitable for inclusion in a variety of study designs. In 2018, the Pediatric Development Working Group of experts identified 18 well-established protocols of pediatric development for inclusion in the Toolkit to complement existing protocols. Collectively, the protocols assess parenting, child care attendance and quality, peer relationships, home environment, neonatal abstinence, emotional and behavioral functioning, and other factors that influence child development. The Toolkit provides detailed data collection protocols, data dictionaries, and worksheets to help investigators incorporate these protocols into their study designs. Using standard protocols in studies with pediatric participants will support consistent data collection, improve data quality, and facilitate cross-study analyses to ultimately improve child health.

Celebrating more than twenty years as the single best source in the field, this Fifth Edition has now expanded into two cornerstone volumes with 53 fully inclusive chapters and 73 renowned contributors that comprehensively address every topic and trend relevant to the identification, diagnosis, and management of endocrine and endocrine-related diso

An in-depth, comprehensive and practical guide to egocentric network analysis, focusing on fundamental theoretical, research design, and analytic issues.

The successful implementation of evidence into practice is dependent on aligning the available evidence to the particular context through the active ingredient of facilitation. Designed to support the widely recognised PARIHS framework, which works as a guide to plan, action and evaluate the implementation of evidence into practice, this book provides a very practical ‘how-to’ guide for facilitating the whole process. This text discusses: undertaking an initial diagnosis of the context and reaching a consensus on the evidence to be implemented; how to link the research evidence with clinical and patients’ experience and local information in the form of audit data or patient and staff feedback; the range of diagnostic, consensus building and stakeholder consultation methods that can be helpful; a description of facilitator roles and facilitation methods, tools and techniques; some of theories that underpin the PARIHS framework and how these have been integrated to inform a revised version of PARIHS Including internationally-sourced case study examples to illustrate how the facilitation role and facilitation skills have been applied in a range of different health care settings, this is the ideal text for those interested in leading or facilitating evidence based implementation projects, from the planning stage through to evaluation.

The "Handbook" covers how the effects of a tobacco control policy are determined, the core constructs for understanding how and why a given policy works, the potential moderator variables to consider when evaluating a given policy and the data sources that might be useful for evaluation. The "Handbook" includes logic models outlining relevant constructs for evaluating the effectiveness of policies on tobacco taxation, smoke-free environments, tobacco product regulations, limits on tobacco marketing communications, product labeling, anti-tobacco public communication campaigns and tobacco use cessation interventions.

This textbook provides a detailed resource introducing the subdiscipline of mental health informatics. It systematically reviews the methods, paradigms, tools and knowledge base in both clinical and bioinformatics and across the spectrum from research to clinical care. Key foundational technologies, such as terminologies, ontologies and data exchange standards are presented and given context within the complex landscape of mental health conditions, research and care. The learning health system model is utilized to emphasize the bi-directional nature of the translational science associated with mental health processes. Descriptions of the data, technologies, paradigms and products that are generated by and used in each process and their limitations are discussed. Mental Health Informatics: Enabling a Learning Mental Healthcare System is a comprehensive introductory resource for students, educators and researchers in mental health informatics and related behavioral sciences. It is an ideal resource for use in a survey course for both pre- and post-doctoral training programs, as well as for healthcare administrators, funding entities, vendors and product developers working to make mental healthcare more evidence-based.

Determinants of health - like physical activity levels and living conditions - have traditionally been the concern of public health and have not been linked closely to clinical practice. However, if standardized social and behavioral data can be incorporated into patient electronic health records (EHRs), those data can provide crucial information about factors that influence health and the effectiveness of treatment. Such information is useful for diagnosis, treatment choices, policy, health care system design, and innovations to improve health outcomes and reduce health care costs. Capturing Social and Behavioral Domains and Measures in Electronic Health Records: Phase 2 identifies domains and measures that capture the social determinants of health to inform the development of recommendations for the meaningful use of EHRs. This report is the second part of a two-part study. The Phase 1 report identified 17 domains for inclusion in EHRs. This report pinpoints 12 measures related to 11 of the initial domains and considers the implications of incorporating them into all EHRs. This book includes three chapters from the Phase 1 report in addition to the new Phase 2 material. Standardized use of EHRs that include social and behavioral domains could provide better patient care, improve population health, and enable more informative research. The recommendations of Capturing Social and Behavioral Domains and Measures in Electronic Health Records: Phase 2 will provide valuable information on which to base problem identification, clinical diagnoses, patient treatment, outcomes assessment, and population health measurement.

Integrates the various disciplines of the science of health disparities in one comprehensive volume The Science of Health Disparities Research is an indispensable source of up-to-date information on clinical and translational health disparities science. Building upon the advances in health disparities research over the past decade, this authoritative volume informs policies and practices addressing the diseases, disorders, and gaps in health outcomes that are more prevalent in minority populations and socially disadvantaged communities. Contributions by recognized scholars and leaders in the field—featuring contemporary research, conceptual models, and a broad range of scientific perspectives—provide an interdisciplinary approach to reducing inequalities in population health, encouraging community engagement in the research process, and promoting social justice. In-depth chapters help readers better understand the specifics of minority health and health disparities while demonstrating the importance of advancing theory, refining measurement, improving investigative methods, and diversifying scientific research. In 26 chapters, the book examines topics including the etiology of health disparities research, the determinants of population health, research ethics, and research in African American, Asians, Latino, American Indian, and other vulnerable populations. Providing a unified framework on the principles and applications of the science of health disparities research, this important volume: Defines the field of health disparities science and suggests new directions in scholarship and research Explains basic definitions, principles, and concepts for identifying, understanding and addressing health disparities Provides guidance on both conducting health disparities research and translating the results Examines how social, historical and contemporary injustices may influence the health of racial and ethnic minorities Illustrates the increasing national and global importance of addressing health disparities Discusses population health training, capacity-building, and the transdisciplinary tools needed to advance health equity A significant contribution to the field, The Science of Health Disparities Research is an essential resource for students and basic and clinical researchers in genetics, population genetics, and public health, health care policymakers, and epidemiologists, medical students, and clinicians, particularly those working with minority, vulnerable, or underserved populations.

Genome editing is a powerful new tool for making precise alterations to an organism's genetic material. Recent scientific advances have made genome editing more efficient, precise, and flexible than ever before. These advances have spurred an explosion of interest from around the globe in the possible ways in which genome editing can improve human health. The speed at which these technologies are being developed and applied has led many policymakers and stakeholders to express concern about whether appropriate systems are in place to govern these technologies and how and when the public should be engaged in these decisions. Human Genome Editing considers important questions about the human application of genome editing including: balancing potential benefits with unintended risks, governing the use of genome editing, incorporating societal values into clinical applications and policy decisions, and respecting the inevitable differences across nations and cultures that will shape how and whether to use these new technologies. This report proposes criteria for heritable germline editing, provides conclusions on the crucial need for public education and engagement, and presents 7 general principles for the governance of human genome editing.