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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.
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.
Journey into the world of book collecting with the Goldstones-rediscover the joy of reading, laugh, and fall in love with books all over again. The idea that books had stories associated with them that had nothing to do with the stories inside them was new to us. We had always valued the history, the world of ideas contained between the covers of a book or, as in the case of The Night Visitor, some special personal significance. Now, for the first time, we began to appreciate that there was a history and a world of ideas embodied by the books themselves. Part travel story, part love story, and part memoir, Lawrence and Nancy Goldstone's Used and Rare provides a delightful love letter to book lovers everywhere.
A handy guide to problems of confused or disputed usage based on the critically acclaimed Merriam-Webster's Dictionary of English Usage. Over 2,000 entries explain the background and basis of usage controversies and offer expert advice and recommendations.
What determines whether complex life will arise on a planet, or even any life at all? Questions such as these are investigated in this groundbreaking book. In doing so, the authors synthesize information from astronomy, biology, and paleontology, and apply it to what we know about the rise of life on Earth and to what could possibly happen elsewhere in the universe. Everyone who has been thrilled by the recent discoveries of extrasolar planets and the indications of life on Mars and the Jovian moon Europa will be fascinated by Rare Earth, and its implications for those who look to the heavens for companionship.
On a fantastic island populated by unusual animals, a pirate captain finds a trustworthy companion in the little "Yellow Creature."
THE ESSENTIAL WORK IN TRAVEL MEDICINE -- NOW COMPLETELY UPDATED FOR 2018 As unprecedented numbers of travelers cross international borders each day, the need for up-to-date, practical information about the health challenges posed by travel has never been greater. For both international travelers and the health professionals who care for them, the CDC Yellow Book 2018: Health Information for International Travel is the definitive guide to staying safe and healthy anywhere in the world. The fully revised and updated 2018 edition codifies the U.S. government's most current health guidelines and information for international travelers, including pretravel vaccine recommendations, destination-specific health advice, and easy-to-reference maps, tables, and charts. The 2018 Yellow Book also addresses the needs of specific types of travelers, with dedicated sections on: · Precautions for pregnant travelers, immunocompromised travelers, and travelers with disabilities · Special considerations for newly arrived adoptees, immigrants, and refugees · Practical tips for last-minute or resource-limited travelers · Advice for air crews, humanitarian workers, missionaries, and others who provide care and support overseas Authored by a team of the world's most esteemed travel medicine experts, the Yellow Book is an essential resource for travelers -- and the clinicians overseeing their care -- at home and abroad.
While some may wonder, “Does the world really need another flavored vodka?” no one answers this question quite so memorably as spirits writer and raconteur Jason Wilson does in Boozehound. (By the way, the short answer is no.) A unique blend of travelogue, spirits history, and recipe collection, Boozehound explores the origins of what we drink and the often surprising reasons behind our choices. In lieu of odorless, colorless, tasteless spirits, Wilson champions Old World liquors with hard-to-define flavors—a bitter and complex Italian amari, or the ancient, aromatic herbs of Chartreuse, as well as distinctive New World offerings like lively Peruvian pisco. With an eye for adventure, Wilson seeks out visceral experiences at the source of production—visiting fields of spiky agave in Jalisco, entering the heavily and reverently-guarded Jägermeister herb room in Wolfenbüttel, and journeying to the French Alps to determine if mustachioed men in berets really handpick blossoms to make elderflower liqueur. In addition, Boozehound offers more than fifty drink recipes, from three riffs on the Manhattan to cocktail-geek favorites like the Aviation and the Last Word. These recipes are presented alongside a host of opinionated essays that cherish the rare, uncover the obscure, dethrone the overrated, and unravel the mysteries of taste, trends, and terroir. Through his far-flung, intrepid traveling and tasting, Wilson shows us that perhaps nothing else as entwined with the history of human culture is quite as much fun as booze.