Challenges And Opportunities In Using Residual Newborn Screening Samples For Translational Research
Challenges And Opportunities In Using Residual Newborn Screening Samples For Translational Research Book in PDF, ePub and Kindle version is available to download in english. Read online anytime anywhere directly from your device. Click on the download button below to get a free pdf file of Challenges And Opportunities In Using Residual Newborn Screening Samples For Translational Research book. This book definitely worth reading, it is an incredibly well-written.
Institute of Medicine,Board on Health Sciences Policy,Roundtable on Translating Genomic-Based Research for Health
Author : Institute of Medicine,Board on Health Sciences Policy,Roundtable on Translating Genomic-Based Research for Health Publisher : National Academies Press Page : 85 pages File Size : 44,5 Mb Release : 2010-11-23 Category : Medical ISBN : 9780309177139
Challenges and Opportunities in Using Residual Newborn Screening Samples for Translational Research by Institute of Medicine,Board on Health Sciences Policy,Roundtable on Translating Genomic-Based Research for Health Pdf
Newborn screening samples are used to test more than 4 million infants each year for life-threatening diseases that are treatable if found at birth. These specimens also represent a potentially invaluable resource for public health and biomedical research. The IOM held a workshop to examine issues surrounding the use of residual specimens for translational research.
Roundtable on Translating Genomic-Based Research for Health,Board on Health Sciences Policy,Institute Of Medicine
Author : Roundtable on Translating Genomic-Based Research for Health,Board on Health Sciences Policy,Institute Of Medicine Publisher : Unknown Page : 84 pages File Size : 46,9 Mb Release : 2010-11-23 Category : Electronic ISBN : 0309383102
Challenges and Opportunities in Using Residual Newborn Screening Samples for Translational Research by Roundtable on Translating Genomic-Based Research for Health,Board on Health Sciences Policy,Institute Of Medicine Pdf
Newborn screening samples are used to test more than 4 million infants each year for life-threatening diseases that are treatable if found at birth. These specimens also represent a potentially invaluable resource for public health and biomedical research. The IOM held a workshop to examine issues surrounding the use of residual specimens for translational research.
Institute of Medicine,Board on Health Sciences Policy,Roundtable on Translating Genomic-Based Research for Health
Author : Institute of Medicine,Board on Health Sciences Policy,Roundtable on Translating Genomic-Based Research for Health Publisher : National Academies Press Page : 84 pages File Size : 54,7 Mb Release : 2010-12-23 Category : Medical ISBN : 9780309159548
Challenges and Opportunities in Using Residual Newborn Screening Samples for Translational Research by Institute of Medicine,Board on Health Sciences Policy,Roundtable on Translating Genomic-Based Research for Health Pdf
Newborn screening samples are used to test more than 4 million infants each year for life-threatening diseases that are treatable if found at birth. These specimens also represent a potentially invaluable resource for public health and biomedical research. The IOM held a workshop to examine issues surrounding the use of residual specimens for translational research.
Warren S. Browner,Thomas B. Newman,Steven R. Cummings,Deborah G. Grady
Author : Warren S. Browner,Thomas B. Newman,Steven R. Cummings,Deborah G. Grady Publisher : Lippincott Williams & Wilkins Page : 589 pages File Size : 53,7 Mb Release : 2022-01-27 Category : Medical ISBN : 9781975174422
Designing Clinical Research by Warren S. Browner,Thomas B. Newman,Steven R. Cummings,Deborah G. Grady Pdf
For more than 30 years, Designing Clinical Research has set the standard as the most practical, authoritative guide for physicians, nurses, pharmacists, and other practitioners involved in all forms of clinical and public health research. Using a reader-friendly writing style, Drs. Warren S. Browner, Thomas B. Newman, Steven R. Cummings, Deborah G. Grady, Alison J. Huang, Alka M. Kanaya, and Mark J. Pletcher, all of the University of California, San Francisco, provide up-to-date, commonsense approaches to the challenging judgments involved in designing, funding, and implementing a study. This state-of-the-art fifth edition features new figures, tables, and design, as well as new editors, new content, and extensively updated references to keep you current.
Privacy, Confidentiality, and Health Research by William W. Lowrance Pdf
The potential of the e-health revolution, increased data sharing, database linking, biobanks and new techniques such as geolocation and genomics to advance human health is immense. For the full potential to be realized, though, privacy and confidentiality will have to be dealt with carefully. Problematically, many conventional approaches to such pivotal matters as consent, identifiability, and safeguarding and security are inadequate. In many places, research is impeded by an overgrown thicket of laws, regulations, guidance and governance. The challenges are being heightened by the increasing use of biospecimens, and by the globalization of research in a world that has not globalized privacy protection. Drawing on examples from many developed countries and legal jurisdictions, the book critiques the issues, summarizes various ethics, policy, and legal positions (and revisions underway), describes innovative solutions, provides extensive references and suggests ways forward.
Author : Stefan Timmermans,Mara Buchbinder Publisher : University of Chicago Press Page : 320 pages File Size : 50,5 Mb Release : 2015-05-06 Category : Medical ISBN : 9780226273617
Saving Babies? by Stefan Timmermans,Mara Buchbinder Pdf
Introduction: the consequences of newborn screening -- The expansion of newborn screening -- Patients-in-waiting -- Shifting disease ontologies -- Is my baby normal? -- The limits of prevention -- Does expanded newborn screening save lives? -- Conclusion: the future of expanded newborn screening
Author : Institute of Medicine Publisher : National Academies Press Page : 203 pages File Size : 49,9 Mb Release : 2011-10-12 Category : Medical ISBN : 9780309215367
This report illustrates the work of IOM committees in selected, major areas in recent years, followed by a description of IOM's convening and collaborative activities and fellowship programs. The last section provides a comprehensive bibliography of IOM reports published since 2007.
Sustaining Surveillance: The Importance of Information for Public Health by John G. Francis,Leslie P. Francis Pdf
This book presents a comprehensive theory of the ethics and political philosophy of public health surveillance based on reciprocal obligations among surveillers, those under surveillance, and others potentially affected by surveillance practices. Public health surveillance aims to identify emerging health trends, population health trends, treatment efficacy, and methods of health promotion--all apparently laudatory goals. Nonetheless, as with anti-terrorism surveillance, public health surveillance raises complex questions about privacy, political liberty, and justice both of and in data use. Individuals and groups can be chilled in their personal lives, stigmatized or threatened, and used for the benefit of others when health information is wrongfully collected or used. Transparency and openness about data use, public involvement in decisions, and just distribution of the benefits of surveillance are core elements in the justification of surveillance practices. Understanding health surveillance practices, the concerns it raises, and how to respond to them is critical not only to ethical and trustworthy but also to publicly acceptable and ultimately sustainable surveillance practices. The book is of interest to scholars and practitioners of the ethics and politics of public health, bioethics, privacy and data technology, and health policy. These issues are ever more pressing in pandemic times, where misinformation can travel quickly and suspicions about disease spread, treatment efficacy, and vaccine safety can have devastating public health effects.
The PKU Paradox by Diane B. Paul,Jeffrey P. Brosco Pdf
How did a disease of marginal public health significance acquire paradigmatic status in public health and genetics? In a lifetime of practice, most physicians will never encounter a single case of PKU. Yet every physician in the industrialized world learns about the disease in medical school and, since the early 1960s, the newborn heel stick test for PKU has been mandatory in many countries. Diane B. Paul and Jeffrey P. Brosco’s beautifully written book explains this paradox. PKU (phenylketonuria) is a genetic disorder that causes severe cognitive impairment if it is not detected and treated with a strict and difficult diet. Programs to detect PKU and start treatment early are deservedly considered a public health success story. Some have traded on this success to urge expanded newborn screening, defend basic research in genetics, and confront proponents of genetic determinism. In this context, treatment for PKU is typically represented as a simple matter of adhering to a low-phenylalanine diet. In reality, the challenges of living with PKU are daunting. In this first general history of PKU, a historian and a pediatrician explore how a rare genetic disease became the object of an unprecedented system for routine testing. The PKU Paradox is informed by interviews with scientists, clinicians, policymakers, and individuals who live with the disease. The questions it raises touch on ongoing controversies about newborn screening and what happens to blood samples collected at birth.
Genomic Essentials for Graduate Level Nurses by Diane C. Seibert,Quannetta T. Edwards,Ann H. Maradiegue,Susan T. Tinley Pdf
Presents genetics and genomic essentials specifically for graduate-level nursesPrenatal care, cardiology, cancer and other disease systems covered in depth by chapter expertsKey chapter devoted to ethical and legal issues and to future technology Designed as both a nursing reference and course text, this book presents genetics and genomic essentials specifically for graduate-level nurses. Preliminary chapters cover the basics of genetics, risk assessment and genetic testing. With chapter contributions by topic experts, the remainder of the book is organized by disease system and covers genetics and genomics in prenatal care, neurology, cancer, respiratory function, cardiology, pharmacogenomics, hematology and others. Key chapters on ethical and legal issues and future technology are also included. This volume is well-suited for nursing faculty, nursing students, nurse leaders, and other nursing professionals with a need for further information on genetics and genomics in a nursing role and across a variety of specialties.
Newborn Screening for Pompe Disease by Wuh-Liang Hwu,Yin-Hsiu Chien,Raymond Wang Pdf
Pompe disease, also known as acid maltase deficiency or acid alpha-glucosidase deficiency, in its most severe form results in a rapidly progressive, neonatal-onset skeletal and cardiomyopathy, leading to early infantile death without treatment. The development of treatment with recombinant enzyme replacement therapy radically transformed the clinical trajectory of those affected, enabling long-term ventilator-free survival with resolution of cardiomyopathy. These positive clinical outcomes resulted in the implementation of newborn screening programs for Pompe disease across the world. This Special Issue highlights some of the experiences of Pompe screening programs worldwide and discusses public policy and ethical issues elicited by presymptomatic screening for Pompe disease.
Guidelines for Nursing Excellence in the Care of Children, Youth, and Families, Second Edition by Dr. Marilyn Krajicek, PhD, RN, FAAN Pdf
First Edition Designated a Doody's Core Title and Winner of an AJN Book of the Year Award! This distinguished title, written by nationally recognized nursing experts in health care and pediatrics, delivers the most current evidence-based practice standards and their application. These guidelines, developed through systematic consensus-building led by the AAN’s Child, Adolescent, and Family Expert Panel, incorporates the wisdom of 17 professional nursing and healthcare organizations regarding the core elements of pediatric nursing excellence. This second edition contains substantial updates to all guidelines based on the most current research evidence and demonstrates examples of how to best apply the guidelines to nursing practice. Disseminating the gold standard of care for infants, children, adolescents, and families, this text addresses access to health care, genetic assessment and counseling, culturally responsive care, care for children and youth with disabilities, and others. Every chapter breaks down a guideline into its definition, history, and implications for clinical, education, policy, and research in nursing practice. A case study based around the analyzed guideline illustrates how the guideline should be employed in nursing practice culminates every chapter. Replete with supplemental online files full of resources to apply these guidelines to nursing practice, Guidelines for Nursing Excellence in the Care of Children, Youth, and Families represents an invaluable resource for pediatric nurses, nursing students, nursing educators, nursing administrators, pediatric and family nurse practitioners, advanced practice nurses, nursing clinicians in public health, school nurses, and nurse researchers. New to the Second Edition: Significant updates to all 17 guidelines based on latest research evidence Contributions by five new nursing and health care organizations A new chapter organizational framework incorporating useful pedagogical elements Examples of applications to education, research, policy, and clinical practice A new faculty toolkit Key Features: Provides current pediatric practice standards formatted and endorsed by 17 leading professional nursing and health care organizations Includes content applicable to advanced practice nurses, educators, researchers, and consultants Includes learning objectives, description of guidelines, applications to practice, exemplars, references, and websites for additional resources
An informative and comprehensive book on the applications and techniques of dried blood spot sampling Dried blood spot (DBS) sampling involves the collection of a small volume of blood, via a simple prick or other means, from a study subject onto a cellulose or polymer paper card, which is followed by drying and transfer to the laboratory for analysis. For many years, this method of blood sample collection has been extensively utilized in some important areas of human healthcare (for example, newborn screening for inherited metabolic disorders and HIV-related epidemiological studies). Because of its advantages over conventional blood, plasma, or serum sample collection, DBS sampling has been valued by the pharmaceutical industry in drug research and development. Dried Blood Spots: Applications and Techniques features contributions from an international team of leading scientists in the field. Their contributions present a unique resource on the history, principles, procedures, methodologies, applications, and emerging technologies related to DBS. Presented in three parts, the book thoroughly examines: Applications of DBS sampling and associated procedures and methodologies in various human healthcare studies Applications and perspectives of DBS sampling in drug research and development, and therapeutic drug monitoring New technologies and emerging applications related to DBS sampling and analysis Dried Blood Spots: Applications and Techniques is a valuable working guide for researchers, professionals, and students in healthcare, medical science, diagnostics, clinical chemistry, and pharmaceuticals, etc.
