NORD Guide to Rare Disorders

NORD Guide to Rare Disorders
Title NORD Guide to Rare Disorders PDF eBook
Author National Organization for Rare Disorders
Publisher Lippincott Williams & Wilkins
Pages 982
Release 2003
Genre Medical
ISBN 9780781730631

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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.

Rare Diseases and Orphan Products

Rare Diseases and Orphan Products
Title Rare Diseases and Orphan Products PDF eBook
Author Institute of Medicine
Publisher National Academies Press
Pages 442
Release 2011-04-03
Genre Medical
ISBN 0309158060

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Rare diseases collectively affect millions of Americans of all ages, but developing drugs and medical devices to prevent, diagnose, and treat these conditions is challenging. The Institute of Medicine (IOM) recommends implementing an integrated national strategy to promote rare diseases research and product development.

Registries for Evaluating Patient Outcomes

Registries for Evaluating Patient Outcomes
Title Registries for Evaluating Patient Outcomes PDF eBook
Author Agency for Healthcare Research and Quality/AHRQ
Publisher Government Printing Office
Pages 385
Release 2014-04-01
Genre Medical
ISBN 1587634333

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This User’s Guide is intended to support the design, implementation, analysis, interpretation, and quality evaluation of registries created to increase understanding of patient outcomes. For the purposes of this guide, a patient registry is an organized system that uses observational study methods to collect uniform data (clinical and other) to evaluate specified outcomes for a population defined by a particular disease, condition, or exposure, and that serves one or more predetermined scientific, clinical, or policy purposes. A registry database is a file (or files) derived from the registry. Although registries can serve many purposes, this guide focuses on registries created for one or more of the following purposes: to describe the natural history of disease, to determine clinical effectiveness or cost-effectiveness of health care products and services, to measure or monitor safety and harm, and/or to measure quality of care. Registries are classified according to how their populations are defined. For example, product registries include patients who have been exposed to biopharmaceutical products or medical devices. Health services registries consist of patients who have had a common procedure, clinical encounter, or hospitalization. Disease or condition registries are defined by patients having the same diagnosis, such as cystic fibrosis or heart failure. The User’s Guide was created by researchers affiliated with AHRQ’s Effective Health Care Program, particularly those who participated in AHRQ’s DEcIDE (Developing Evidence to Inform Decisions About Effectiveness) program. Chapters were subject to multiple internal and external independent reviews.

NORD Resource Guide

NORD Resource Guide
Title NORD Resource Guide PDF eBook
Author
Publisher
Pages 788
Release 2005
Genre Diseases
ISBN

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Renal Resource Guide

Renal Resource Guide
Title Renal Resource Guide PDF eBook
Author Dave Capper
Publisher Dave Capper
Pages 337
Release 2011-01-22
Genre Medical
ISBN 1451596235

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A resource guide to assistance and aid for those with renal failure. Find resources to assist with such things as transportation, medical bills, prescription drugs, independent living, income assistance and much more. While some resources listed here also offer goods and services to those with other disabilities, others may only offer their goods and services to those with renal failure or renal disease. Each have their own focus and requirements.

Resource Directory

Resource Directory
Title Resource Directory PDF eBook
Author
Publisher
Pages 140
Release 1989
Genre People with disabilities
ISBN

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Martindale

Martindale
Title Martindale PDF eBook
Author Sean C. Sweetman
Publisher
Pages 3335
Release 2006-01-01
Genre Medical
ISBN 9780853697046

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This is thirty-fifth edition of Martindale, which provides reliable, and evaluated information on drugs and medicines used throughout the world. It contains encyclopaedic facts about drugs and medicines, with: 5,500 drug monographs; 128,000 preparations; 40,700 reference citations; 10,900 manufacturers. There are synopses of disease treatments which enables identification of medicines, the local equivalent and the manufacturer. It also Includes herbals, diagnostic agents, radiopharmaceuticals, pharmaceutical excipients, toxins, and poisons as well as drugs and medicines. Based on published information and extensively referenced