Overview

Dr. C. Everett Koop, former U.S. Surgeon General, once said, "The best prescription is knowledge." The Agency for Healthcare Research and Quality (AHRQ) of the National Institutes of Health (NIH) echoes this view and recommends that every patient incorporate education into the treatment process. According to the AHRQ:

Finding out more about your condition is a good place to start. By contacting groups that support your condition, visiting your local library, and searching on the Internet, you can find good information to help guide your treatment decisions. Some information may be hard to find—especially if you don't know where to look.

As the AHRQ mentions, finding the right information is not an obvious task. Though many physicians and public officials had thought that the emergence of the Internet would do much to assist patients in obtaining reliable information, in March 2001 the National Institutes of Health issued the following warning:

The number of Web sites offering health-related resources grows every day. Many sites provide valuable information, while others may have information that is unreliable or misleading.

Since the late 1990s, physicians have seen a general increase in patient Internet usage rates. Patients frequently enter their doctor's offices with printed Web pages of home remedies in the guise of latest medical research. This scenario is so common that doctors often spend more time dispelling misleading information than guiding patients through sound therapies. The Official Patient’s Sourcebook on Osteoporosis has been created for patients who have decided to make education and research an integral part of the treatment process. The pages that follow will tell you where and how to look for information covering virtually all topics related to osteoporosis, from the essentials to the most advanced areas of research.

The title of this book includes the word "official." This reflects the fact that the sourcebook draws from public, academic, government, and peer-reviewed research. Selected readings from various agencies are reproduced to give you some of the latest official information available to date on osteoporosis.

Given patients’ increasing sophistication in using the Internet, abundant references to reliable Internet-based resources are provided throughout this sourcebook. Where possible, guidance is provided on how to obtain free-of-charge, primary research results as well as more detailed information via the Internet. E-book and electronic versions of this sourcebook are fully interactive with each of the Internet sites mentioned (clicking on a hyperlink automatically opens your browser to the site indicated). Hard copy users of this sourcebook can type cited Web addresses directly into their browsers to obtain access to the corresponding sites. Since we are working with ICON Health Publications, hard copy Sourcebooks are frequently updated and printed on demand to ensure that the information provided is current.

In addition to extensive references accessible via the Internet, every chapter presents a "Vocabulary Builder." Many health guides offer glossaries of technical or uncommon terms in an appendix. In editing this sourcebook, we have decided to place a smaller glossary within each chapter that covers terms used in that chapter. Given the technical nature of some chapters, you may need to revisit many sections. Building one’s vocabulary of medical terms in such a gradual manner has been shown to improve the learning process.

We must emphasize that no sourcebook on osteoporosis should affirm that a specific diagnostic procedure or treatment discussed in a research study, patent, or doctoral dissertation is "correct" or your best option. This sourcebook is no exception. Each patient is unique. Deciding on appropriate options is always up to the patient in consultation with their physician and healthcare providers.

Organization

This sourcebook is organized into three parts. Part I explores basic techniques to researching osteoporosis (e.g. finding guidelines on diagnosis, treatments, and prognosis), followed by a number of topics, including information on how to get in touch with organizations, associations, or other patient networks dedicated to osteoporosis. It also gives you sources of information that can help you find a doctor in your local area specializing in treating osteoporosis. Collectively, the material presented in Part I is a complete primer on basic research topics for patients with osteoporosis.

Part II moves on to advanced research dedicated to osteoporosis. Part II is intended for those willing to invest many hours of hard work and study. It is here that we direct you to the latest scientific and applied research on osteoporosis. When possible, contact names, links via the Internet, and summaries are provided. It is in Part II where the vocabulary process becomes important as authors publishing advanced research frequently use highly specialized language. In general, every attempt is made to recommend "free-to-use" options.

Part III provides appendices of useful background reading for all patients with osteoporosis or related disorders. The appendices are dedicated to more pragmatic issues faced by many patients with osteoporosis. Accessing materials via medical libraries may be the only option for some readers, so a guide is provided for finding local medical libraries which are open to the public. Part III, therefore, focuses on advice that goes beyond the biological and scientific issues facing patients with osteoporosis.

Scope

While this sourcebook covers osteoporosis, your doctor, research publications, and specialists may refer to your condition using a variety of terms. Therefore, you should understand that osteoporosis is often considered a synonym or a condition closely related to the following:
Disuse Osteoporosis
Idiopathic Osteoporosis
Senile Osteoporosis
In addition to synonyms and related conditions, physicians may refer to osteoporosis using certain coding systems. The International Classification of Diseases, 9th Revision, Clinical Modification (ICD-9-CM) is the most commonly used system of classification for the world's illnesses. Your physician may use this coding system as an administrative or tracking tool. The following classification is commonly used for osteoporosis:
733.0 osteoporosis
733.00 osteoporosis, unspecified
733.01 senile osteoporosis
733.02 idiopathic osteoporosis
733.03 disuse osteoporosis
733.09 other

For the purposes of this sourcebook, we have attempted to be as inclusive as possible, looking for official information for all of the synonyms relevant to osteoporosis. You may find it useful to refer to synonyms when accessing databases or interacting with healthcare professionals and medical librarians.

Moving Forward

Since the 1980s, the world has seen a proliferation of healthcare guides covering most illnesses. Some are written by patients or their family members. These generally take a layperson's approach to understanding and coping with an illness or disorder. They can be uplifting, encouraging, and highly supportive. Other guides are authored by physicians or other healthcare providers who have a more clinical outlook. Each of these two styles of guide has its purpose and can be quite useful.

As editors, we have chosen a third route. We have chosen to expose you to as many sources of official and peer-reviewed information as practical, for the purpose of educating you about basic and advanced knowledge as recognized by medical science today. You can think of this sourcebook as your personal Internet age reference librarian.

Why "Internet age"? All too often, patients diagnosed with osteoporosis will log on to the Internet, type words into a search engine, and receive several Web site listings which are mostly irrelevant or redundant. These patients are left to wonder where the relevant information is, and how to obtain it. Since only the smallest fraction of information dealing with osteoporosis is even indexed in search engines, a non-systematic approach often leads to frustration and disappointment. With this sourcebook, we hope to direct you to the information you need that you would not likely find using popular Web directories. Beyond Web listings, in many cases we will reproduce brief summaries or abstracts of available reference materials. These abstracts often contain distilled information on topics of discussion.

While we focus on the more scientific aspects of osteoporosis, there is, of course, the emotional side to consider. Later in the sourcebook, we provide a chapter dedicated to helping you find peer groups and associations that can provide additional support beyond research produced by medical science. We hope that the choices we have made give you the most options available in moving forward. In this way, we wish you the best in your efforts to incorporate this educational approach into your treatment plan.

The Editors

This is a 3-in-1 reference book. It gives a complete medical dictionary covering hundreds of terms and expressions relating to hemodialysis. It also gives extensive lists of bibliographic citations. Finally, it provides information to users on how to update their knowledge using various Internet resources. The book is designed for physicians, medical students preparing for Board examinations, medical researchers, and patients who want to become familiar with research dedicated to hemodialysis.{\r}{\n}{\r}{\n}If your time is valuable, this book is for you. First, you will not waste time searching the Internet while missing a lot of relevant information. Second, the book also saves you time indexing and defining entries. Finally, you will not waste time and money printing hundreds of web pages.

In addition to offering a structured and comprehensive bibliography, this medical reference on hemodialysis will quickly direct you to resources and reliable information on the Internet, from the essentials to the most advanced areas of research. Public, academic, government, and peer-reviewed research studies are emphasized. Various abstracts are reproduced to give you some of the latest official information available to date. Abundant guidance is given on how to obtain free-of-charge primary research results via the Internet. E-book and electronic versions of this book are fully interactive with the Internet. For readers unfamiliar with the Internet, detailed instructions are offered on how to access electronic resources. For readers unfamiliar with medical terminology, a comprehensive glossary is provided. For readers without access to Internet resources, a directory of medical libraries, that have or can locate references cited here, is given. We hope these resources will prove useful to the widest possible audience seeking information on hemodialysis.

In March 2001, the National Institutes of Health issued the following warning: "The number of Web sites offering health-related resources grows every day. Many sites provide valuable information, while others may have information that is unreliable or misleading." Furthermore, because of the rapid increase in Internet-based information, many hours can be wasted searching, selecting, and printing. Since only the smallest fraction of information dealing with hemodialysis is indexed in search engines, such as www.google.com or others, a non-systematic approach to Internet research can be not only time consuming, but also incomplete. This book was created for medical professionals, students, and members of the general public who want to conduct medical research using the most advanced tools available and spending the least amount of time doing so.

• Forward
• Chapter 1. Studies on Hemodialysis
• Overview
• The Combined Health Information Database
• Federally Funded Research on Hemodialysis
• E-Journals: PubMed Central
• The National Library of Medicine: PubMed
• Chapter 2. Nutrition and Hemodialysis
• Overview
• Finding Nutrition Studies on Hemodialysis
• Federal Resources on Nutrition
• Additional Web Resources
• Chapter 3. Alternative Medicine and Hemodialysis
• Overview
• National Center for Complementary and Alternative Medicine
• Additional Web Resources
• General References
• Chapter 4. Dissertations on Hemodialysis
• Overview
• Dissertations on Hemodialysis
• Keeping Current
• Chapter 5. Patents on Hemodialysis
• Overview
• Patents on Hemodialysis
• Patent Applications on Hemodialysis
• Keeping Current
• Chapter 6. Books on Hemodialysis
• Overview
• Book Summaries: Federal Agencies
• Book Summaries: Online Booksellers
• Chapters on Hemodialysis
• Directories
• Chapter 7. Multimedia on Hemodialysis
• Overview
• Video Recordings
• Audio Recordings
• Chapter 8. Periodicals and News on Hemodialysis
• Overview
• News Services and Press Releases
• Newsletters on Hemodialysis
• Newsletter Articles
• Academic Periodicals covering Hemodialysis
• Chapter 9. Researching Medications
• Overview
• U.S. Pharmacopeia
• Commercial Databases
• Researching Orphan Drugs
• Appendix A. Physician Resources
• Overview
• NIH Guidelines
• NIH Databases
• Other Commercial Databases
• Appendix B. Patient Resources
• Overview
• Patient Guideline Sources
• Finding Associations
• Appendix C. Finding Medical Libraries
• Overview
• Preparation
• Finding a Local Medical Library
• Medical Libraries in the U.S. and Canada
• ONLINE GLOSSARIES
• Online Dictionary Directories
• HEMODIALYSIS DICTIONARY
• INDEX