National Organization for Rare Disorders's Books

NORD Guide to Rare Disorders

By: National Organization for Rare Disorders

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NORD Guide to Rare Disorders

By: National Organization for Rare Disorders

NORD Guide to Rare Disorders is a comprehensive, practical, authoritative guide to the diagnosis and management of more than 800 rare diseases. The diseases are discussed in a uniform, easy-to-follow format--a brief description, signs and symptoms, etiology, related disorders, epidemiology, standard treatment, investigational treatment, resources, and references.The book includes a complete directory of orphan drugs, a full-color atlas of visual diagnostic signs, and a Master Resource List of support groups and helpful organizations. An index of symptoms and key words offers physicians valuable assistance in finding the information they need quickly.

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982

Publisher

Lippincott Williams & Wilkins

Published Date

ISBN 10

0781730635

ISBN 13

9780781730631

The Complete Directory for People with Rare Disorders

A Comprehensive Guide to Over 1,000 Rare Disorders from the National Organization for Rare Disorders, Inc

By: National Organization for Rare Disorders

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The Complete Directory for People with Rare Disorders

A Comprehensive Guide to Over 1,000 Rare Disorders from the National Organization for Rare Disorders, Inc

By: National Organization for Rare Disorders

This reference for lay readers and health care professionals presents information on disorders affecting fewer than 200,000 people in the U.S. at any one time. Each of the more than 1,100 entries describes the characteristics, causes, and symptoms of a particular disorder. The extensively cross-referenced volume also features profiles of 680 disease specific organizations as well as 629 umbrella organizations and 77 government agencies. Annotation copyrighted by Book News, Inc., Portland, OR

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828

Publisher

Sedgwick Press

Published Date

ISBN 10

1891482181

ISBN 13

9781891482182

Respiratory Health Effects of Airborne Hazards Exposures in the Southwest Asia Theater of Military Operations

By: National Academies of Sciences, Engineering, and Medicine,Health and Medicine Division,Board on Population Health and Public Health Practice,Committee on the Respiratory Health Effects of Airborne Hazards Exposures in the Southwest Asia Theater of Military Operations

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Respiratory Health Effects of Airborne Hazards Exposures in the Southwest Asia Theater of Military Operations

More than 3.7 million U.S. service members have participated in operations taking place in the Southwest Asia Theater of Military Operations since 1990. These operations include the 1990-1991 Persian Gulf War, a post-war stabilization period spanning 1992 through September 2001, and the campaigns undertaken in the wake of the September 11, 2001, attacks. Deployment to Iraq, Kuwait, Saudi Arabia, Bahrain, Gulf of Aden, Gulf of Oman, Oman, Qatar, the United Arab Emirates, and Afghanistan exposed service members to a number of airborne hazards, including oil-well fire smoke, emissions from open burn pits, dust and sand suspended in the air, and exhaust from diesel vehicles. The effects of these were compounded by stressors like excessive heat and noise that are inevitable attributes of service in a combat environment. Respiratory Health Effects of Airborne Hazards Exposures in the Southwest Asia Theater of Military Operations reviews the scientific evidence regarding respiratory health outcomes in veterans of the Southwest Asia conflicts and identifies research that could feasibly be conducted to address outstanding questions and generate answers, newly emerging technologies that could aid in these efforts, and organizations that the Veterans Administration might partner with to accomplish this work.

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Page Count

271

Publisher

National Academies Press

Published Date

ISBN 10

0309679109

ISBN 13

9780309679107

NORD Compendium of Rare Diseases and Disorders

By: National Organization for Rare Disorders

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NORD Compendium of Rare Diseases and Disorders

By: National Organization for Rare Disorders

A unique compendium providing comprehensive information on the diagnosis and management of over 1,000 rare diseases and disorders. This fully revised and expanded NORD Compendium of Rare Diseases and Disorders is the most comprehensive and authoritative resource of its kind. The Compendium provides a wealth of quick-reference information and data on more than 1,100 rare diseases and more than 1,100 organizations from signs, symptoms, and etiology to support groups, researchers, and treatments.The book is an invaluable diagnostic tool for physicians in the early identification of rare diseases, for researchers on genetic disorders, for non-profit organizations, and for patients who can often go years with proper diagnosis. While rare or orphan diseases are defined as those affecting fewer than 200,000 people in the United States, more than 25 million Americans are actually suffering from one of them. Due to the passage of the landmark Orphan Drug Act of 1983, together with the work of the National Organization for Rare Diseases, there is heightened awareness of and interest in these conditions among physicians, drug discovery researchers, government officials, and the health insurance industry. The FDA has approved 288 drugs and therapies to treat rare diseases, and over 1,400 products are in development and being tested for future approval since the Orphan Drug Act legislation was passed. An essential reference for ALL Libraries: Medical physician and hospital reference and research Government research, support, and funding Academic research and education Industry development of new drugs and therapies Public patient information, advocacy, and support.

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893

Published Date

ISBN 10

0913113417

ISBN 13

9780913113417

The AIDS Research Program of the National Institutes of Health

By: Institute of Medicine,Committee to Study the AIDS Research Program of the National Institutes of Health

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The AIDS Research Program of the National Institutes of Health

By: Institute of Medicine,Committee to Study the AIDS Research Program of the National Institutes of Health

This book, written at the request of the National Institutes of Health (NIH) to assist its AIDS program office in planning future directions, contains a series of recommendations for ensuring that AIDS research is a well-organized, well-planned, and comprehensive long-range program leading to the control and eventual eradication of the disease. The recommendations are intended to strengthen the planning, evaluation, and coordination of AIDS research activities; ensure their quality and cost-effectiveness; stimulate further development of promising research areas; increase the level of support for AIDS research so that researchers can carry out a comprehensive program; and provide the personnel and facilities at NIH needed to conduct and manage an effective, efficient AIDS research program. The book also identifies barriers in the delivery and financing of health care that are outside NIH's responsibility, but that adversely affect its AIDS clinical research efforts, and urges federal action to eliminate them.

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Page Count

155

Publisher

National Academies Press

Published Date

ISBN 10

0309044367

ISBN 13

9780309044363

Exploring Novel Clinical Trial Designs for Gene-Based Therapies

Proceedings of a Workshop

By: National Academies of Sciences, Engineering, and Medicine,Health and Medicine Division,Board on Health Sciences Policy,Forum on Regenerative Medicine

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Exploring Novel Clinical Trial Designs for Gene-Based Therapies

Proceedings of a Workshop

By: National Academies of Sciences, Engineering, and Medicine,Health and Medicine Division,Board on Health Sciences Policy,Forum on Regenerative Medicine

Recognizing the potential design complexities and ethical issues associated with clinical trials for gene therapies, the Forum on Regenerative Medicine of the National Academies of Sciences, Engineering, and Medicine held a 1-day workshop in Washington, DC, on November 13, 2019. Speakers at the workshop discussed patient recruitment and selection for gene-based clinical trials, explored how the safety of new therapies is assessed, reviewed the challenges involving dose escalation, and spoke about ethical issues such as informed consent and the role of clinicians in recommending trials as options to their patients. The workshop also included discussions of topics related to gene therapies in the context of other available and potentially curative treatments, such as bone marrow transplantation for hemoglobinopathies. This publication summarizes the presentation and discussion of the workshop.

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Page Count

127

Publisher

National Academies Press

Published Date

ISBN 10

0309672988

ISBN 13

9780309672986

A Foundation for Evidence-Driven Practice

A Rapid Learning System for Cancer Care: Workshop Summary

By: Institute of Medicine,Board on Health Care Services,National Cancer Policy Forum

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A Foundation for Evidence-Driven Practice

A Rapid Learning System for Cancer Care: Workshop Summary

By: Institute of Medicine,Board on Health Care Services,National Cancer Policy Forum

The IOM's National Cancer Policy Forum held a workshop October 5-6, 2009, to examine how to apply the concept of a 'rapid learning health system' to the problem of cancer. This document summarizes the workshop.

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125

Publisher

National Academies Press

Published Date

ISBN 10

0309157471

ISBN 13

9780309157476

Sharing Clinical Research Data

Workshop Summary

By: Institute of Medicine,Board on Health Care Services,Board on Health Sciences Policy,Roundtable on Translating Genomic-Based Research for Health,National Cancer Policy Forum,Forum on Neuroscience and Nervous System Disorders,Forum on Drug Discovery, Development, and Translation

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Sharing Clinical Research Data

Workshop Summary

Pharmaceutical companies, academic researchers, and government agencies such as the Food and Drug Administration and the National Institutes of Health all possess large quantities of clinical research data. If these data were shared more widely within and across sectors, the resulting research advances derived from data pooling and analysis could improve public health, enhance patient safety, and spur drug development. Data sharing can also increase public trust in clinical trials and conclusions derived from them by lending transparency to the clinical research process. Much of this information, however, is never shared. Retention of clinical research data by investigators and within organizations may represent lost opportunities in biomedical research. Despite the potential benefits that could be accrued from pooling and analysis of shared data, barriers to data sharing faced by researchers in industry include concerns about data mining, erroneous secondary analyses of data, and unwarranted litigation, as well as a desire to protect confidential commercial information. Academic partners face significant cultural barriers to sharing data and participating in longer term collaborative efforts that stem from a desire to protect intellectual autonomy and a career advancement system built on priority of publication and citation requirements. Some barriers, like the need to protect patient privacy, pre- sent challenges for both sectors. Looking ahead, there are also a number of technical challenges to be faced in analyzing potentially large and heterogeneous datasets. This public workshop focused on strategies to facilitate sharing of clinical research data in order to advance scientific knowledge and public health. While the workshop focused on sharing of data from preplanned interventional studies of human subjects, models and projects involving sharing of other clinical data types were considered to the extent that they provided lessons learned and best practices. The workshop objectives were to examine the benefits of sharing of clinical research data from all sectors and among these sectors, including, for example: benefits to the research and development enterprise and benefits to the analysis of safety and efficacy. Sharing Clinical Research Data: Workshop Summary identifies barriers and challenges to sharing clinical research data, explores strategies to address these barriers and challenges, including identifying priority actions and "low-hanging fruit" opportunities, and discusses strategies for using these potentially large datasets to facilitate scientific and public health advances.

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157

Publisher

National Academies Press

Published Date

ISBN 10

030926877X

ISBN 13

9780309268776

Navigating the Manufacturing Process and Ensuring the Quality of Regenerative Medicine Therapies

Proceedings of a Workshop

By: National Academies of Sciences, Engineering, and Medicine,Health and Medicine Division,Board on Health Sciences Policy,Forum on Regenerative Medicine

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Navigating the Manufacturing Process and Ensuring the Quality of Regenerative Medicine Therapies

Proceedings of a Workshop

By: National Academies of Sciences, Engineering, and Medicine,Health and Medicine Division,Board on Health Sciences Policy,Forum on Regenerative Medicine

On June 26, 2017, the Forum on Regenerative Medicine hosted a public workshop in Washington, DC, titled Navigating the Manufacturing Process and Ensuring the Quality of Regenerative Medicine Therapies in order to examine and discuss the challenges, opportunities, and best practices associated with defining and measuring the quality of cell and tissue products and raw materials in the research and manufacturing of regenerative medicine therapies. The goal of the workshop was to learn from existing examples of the manufacturing of early-generation regenerative medicine products and to address how progress could be made in identifying and measuring critical quality attributes. The workshop also addressed the challenges of designing and adhering to standards as a way of helping those who are working to scale up processes and techniques from a research laboratory to the manufacturing environment. This publication summarizes the presentations and discussions from the workshop.

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125

Publisher

National Academies Press

Published Date

ISBN 10

0309466474

ISBN 13

9780309466479

Addressing Sickle Cell Disease

A Strategic Plan and Blueprint for Action

By: National Academies of Sciences, Engineering, and Medicine,Health and Medicine Division,Board on Population Health and Public Health Practice,Committee on Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action

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Addressing Sickle Cell Disease

A Strategic Plan and Blueprint for Action

Sickle cell disease (SCD) is a genetic condition that affects approximately 100,000 people in the United States and millions more globally. Individuals with SCD endure the psychological and physiological toll of repetitive pain as well as side effects from the pain treatments they undergo. Some adults with SCD report reluctance to use health care services, unless as a last resort, due to the racism and discrimination they face in the health care system. Additionally, many aspects of SCD are inadequately studied, understood, and addressed. Addressing Sickle Cell Disease examines the epidemiology, health outcomes, genetic implications, and societal factors associated with SCD and sickle cell trait (SCT). This report explores the current guidelines and best practices for the care of patients with SCD and recommends priorities for programs, policies, and research. It also discusses limitations and opportunities for developing national SCD patient registries and surveillance systems, barriers in the healthcare sector associated with SCD and SCT, and the role of patient advocacy and community engagement groups.

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523

Publisher

National Academies Press

Published Date

ISBN 10

030966960X

ISBN 13

9780309669603

Intentional Human Dosing Studies for EPA Regulatory Purposes

Scientific and Ethical Issues

By: National Research Council,Policy and Global Affairs,Science, Technology, and Law Program,Committee on the Use of Third Party Toxicity Research with Human Research Participants

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Intentional Human Dosing Studies for EPA Regulatory Purposes

Scientific and Ethical Issues

By: National Research Council,Policy and Global Affairs,Science, Technology, and Law Program,Committee on the Use of Third Party Toxicity Research with Human Research Participants

The EPA commissioned The National Academies to provide advice on the vexing question of whether and, if so, under what circumstances EPA should accept and consider intentional human dosing studies conducted by companies or other sources outside the agency (so-called third parties) to gather evidence relating to the risks of a chemical or the conditions under which exposure to it could be judged safe. This report recommends that such studies be conducted and used for regulatory purposes only if all of several strict conditions are met, including the following: The study is necessary and scientifically valid, meaning that it addresses an important regulatory question that can't be answered with animal studies or nondosing human studies; The societal benefits of the study outweigh any anticipated risks to participants. At no time, even when benefits beyond improved regulation exist, can a human dosing study be justified that is anticipated to cause lasting harm to study participants; and All recognized ethical standards and procedures for protecting the interests of study participants are observed. In addition, EPA should establish a Human Studies Review Board (HSRB) to evaluate all human dosing studiesâ€"both at the beginning and upon completion of the experimentsâ€"if they are carried out with the intent of affecting the agency's policy-making.

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226

Publisher

National Academies Press

Published Date

ISBN 10

0309166411

ISBN 13

9780309166416

Core Curriculum for Neonatal Intensive Care Nursing - E-Book

By: AWHONN,M. Terese Verklan,Marlene Walden,National Association of Neonatal Nurses,American Association of Critical-Care Nr

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Core Curriculum for Neonatal Intensive Care Nursing - E-Book

By: AWHONN,M. Terese Verklan,Marlene Walden,National Association of Neonatal Nurses,American Association of Critical-Care Nr

- NEW! CAMTS and AAMS guidelines, techniques for PICC placement, and changes to the Neonatal Resuscitation Program are just a few of the updates that reveal the importance the new edition places on safety practices and procedures. - NEW! Updated chapter on Patient Safety includes selected improvement strategies and resources for neonatal nurses to build a patient safety toolkit, discusses TeamSTEPPS (Team Strategies and Tools to Enhance Performance and Patient Safety), and recognizes human issues, such as shift work and fatigue. - NEW! Increased focus on evidence-based practice for preterm infants, medications, and antepartum-intrapartum complications sets the standard for neonatal nursing practice. - NEW! Strategies to promote inclusionary care better reflect nursing care today by focusing on family-centered care, comprehensive perinatal records, health care teams in the NICU, and best practices in the care of the late preterm infant. - NEW! Comprehensively revised chapter on Immunology identifies risk factors for infection associated with term and preterm infants, distinguishes clinical symptoms and therapies associated with TORCHES CLAP spectrum infections, and includes prevention strategies for hospital-acquired infections. - NEW! Thoroughly updated content and references reflect currency and technologic advances. - NEW! Refocused chapter on Developmental Care guides the nurse to use assessment within the context of the environment and situation to initiate interventions in the moment or use patterns of responses for developing plans of care and presents core measures on evaluating developmental care practices in the NICU.

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943

Publisher

Elsevier Health Sciences

Published Date

ISBN 10

0323265014

ISBN 13

9780323265010

Returning Individual Research Results to Participants

Guidance for a New Research Paradigm

By: National Academies of Sciences, Engineering, and Medicine,Health and Medicine Division,Board on Health Sciences Policy,Committee on the Return of Individual-Specific Research Results Generated in Research Laboratories

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Returning Individual Research Results to Participants

Guidance for a New Research Paradigm

When is it appropriate to return individual research results to participants? The immense interest in this question has been fostered by the growing movement toward greater transparency and participant engagement in the research enterprise. Yet, the risks of returning individual research resultsâ€"such as results with unknown validityâ€"and the associated burdens on the research enterprise are competing considerations. Returning Individual Research Results to Participants reviews the current evidence on the benefits, harms, and costs of returning individual research results, while also considering the ethical, social, operational, and regulatory aspects of the practice. This report includes 12 recommendations directed to various stakeholdersâ€"investigators, sponsors, research institutions, institutional review boards (IRBs), regulators, and participantsâ€"and are designed to help (1) support decision making regarding the return of results on a study-by-study basis, (2) promote high-quality individual research results, (3) foster participant understanding of individual research results, and (4) revise and harmonize current regulations.

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Page Count

399

Publisher

National Academies Press

Published Date

ISBN 10

0309475171

ISBN 13

9780309475174

Book's by National Organization for Rare Disorders

NORD Guide to Rare Disorders

NORD Guide to Rare Disorders

The Complete Directory for People with Rare Disorders

The Complete Directory for People with Rare Disorders

Respiratory Health Effects of Airborne Hazards Exposures in the Southwest Asia Theater of Military Operations

Respiratory Health Effects of Airborne Hazards Exposures in the Southwest Asia Theater of Military Operations

NORD Compendium of Rare Diseases and Disorders

NORD Compendium of Rare Diseases and Disorders

The AIDS Research Program of the National Institutes of Health

The AIDS Research Program of the National Institutes of Health

Exploring Novel Clinical Trial Designs for Gene-Based Therapies

Exploring Novel Clinical Trial Designs for Gene-Based Therapies

A Foundation for Evidence-Driven Practice

A Foundation for Evidence-Driven Practice

Sharing Clinical Research Data

Sharing Clinical Research Data

Navigating the Manufacturing Process and Ensuring the Quality of Regenerative Medicine Therapies

Navigating the Manufacturing Process and Ensuring the Quality of Regenerative Medicine Therapies

Addressing Sickle Cell Disease

Addressing Sickle Cell Disease

Intentional Human Dosing Studies for EPA Regulatory Purposes

Intentional Human Dosing Studies for EPA Regulatory Purposes

Core Curriculum for Neonatal Intensive Care Nursing - E-Book

Core Curriculum for Neonatal Intensive Care Nursing - E-Book

Returning Individual Research Results to Participants

Returning Individual Research Results to Participants

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