Download or read book Social economic Costs and Health related Quality of Life in Patients with Rare Diseases in Europe written by Julio López-Bastida and published by . This book was released on 2016 with total page 117 pages. Available in PDF, EPUB and Kindle. Book excerpt:
Download or read book Rare Diseases and Orphan Products written by Institute of Medicine and published by National Academies Press. This book was released on 2011-04-03 with total page 442 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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.
Download or read book Rare Diseases Epidemiology Update and Overview written by Manuel Posada de la Paz and published by Springer. This book was released on 2017-12-06 with total page 675 pages. Available in PDF, EPUB and Kindle. Book excerpt: The fields of rare diseases research and orphan products development continue to expand with more products in research and development status. In recent years, the role of the patient advocacy groups has evolved into a research partner with the academic research community and the bio-pharmaceutical industry. Unique approaches to research and development require epidemiological data not previously available to assist in protocol study design and patient recruitment for clinical trials required by regulatory agencies prior to approval for access by patents and practicing physicians.
Download or read book Registries for Evaluating Patient Outcomes written by Agency for Healthcare Research and Quality/AHRQ and published by Government Printing Office. This book was released on 2014-04-01 with total page 385 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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.
Download or read book Communicating Rare Diseases and Disorders in the Digital Age written by Costa, Liliana Vale and published by IGI Global. This book was released on 2020-01-03 with total page 412 pages. Available in PDF, EPUB and Kindle. Book excerpt: A primary concern of rare disease diagnosis is the lack of accurate information that may lead to delayed interventions, administering inaccurate treatments, and social consequences. Health communication continues to be one-way and rely on the expertise from the health practitioner. In such a broad spectrum of rare diseases, patients may find it difficult to obtain timely information, accurate diagnosis, and appropriate treatments, surgeries, medications, or psychological counseling in their own countries. The use of information and communication technologies can create new communication channels that address this lack of knowledge. Communicating Rare Diseases and Disorders in the Digital Age is an essential reference source that uses computer-mediated communication to improve patient knowledge when afflicted or dealing with rare health conditions. Featuring research on topics such as support networking, eHealth management, and social computing, this book is ideally designed for health practitioners, physicians, patients, medical administrators, nurses, surgeons, infectious disease educators, hospital directors, world health organizations, academicians, students, and researchers seeking coverage on current advances in health communication, computer science, and epidemiology.
Download or read book Orphan Drugs and Rare Diseases written by David Pryde and published by Royal Society of Chemistry. This book was released on 2014-07-30 with total page 487 pages. Available in PDF, EPUB and Kindle. Book excerpt: Orphan drugs are designated drug substances that are intended to treat rare or ‘orphan’ diseases. More than 7000 rare diseases are known that collectively affect some 6-7% of the developed world’s population; however, individually, any single, rare disease may only affect a handful of people making them commercially unattractive for the biopharmaceutical industry to target. Ground breaking legislation, starting with the Orphan Drug Act that was passed in the US in 1983 to provide financial incentives for companies to develop orphan drugs, has sparked ever increasing interest from biopharmaceutical companies to tackle rare diseases. These developments have made rare diseases, and the orphan drugs that treat them, sufficiently attractive to pharmaceutical development and many pharmaceutical companies now have research units dedicated to this area of research. It is therefore timely to review the area of orphan drugs and some of the basic science, drug discovery and regulatory factors that underpin this important, and growing, area of biomedical research. Written by a combination of academic and industry experts working in the field, this text brings together expert authors in the regulatory, drug development, genetics, biochemistry, patient advocacy group, medicinal chemistry and commercial domains to create a unique and timely reference for all biomedical researchers interested in finding out more about orphan drugs and the rare diseases they treat. Providing an up-to-date monograph, this book covers the basic science, drug discovery and regulatory elements behind orphan drugs and will appeal to medicinal and pharmaceutical chemists, biochemists and anyone working within the fields of rare disease research and drug development or pharmaceuticals in industry or academia.
Download or read book JIMD Reports Volume 22 written by Johannes Zschocke and published by Springer. This book was released on 2015-06-30 with total page 121 pages. Available in PDF, EPUB and Kindle. Book excerpt: JIMD Reports publishes case and short research reports in the area of inherited metabolic disorders. Case reports highlight some unusual or previously unrecorded feature relevant to the disorder or serve as an important reminder of clinical or biochemical features of a Mendelian disorder.
Download or read book Role of Health Economic Data in Policy Making and Reimbursement of New Medical Technologies written by Mihajlo (Michael) Jakovljevic and published by Frontiers Media SA. This book was released on 2017-11-23 with total page 204 pages. Available in PDF, EPUB and Kindle. Book excerpt: This Research Topic was focused on provision of novel medical technologies worldwide keeping in mind financial sustainability challenge. An exemplary area certainly are oncology pharmaceuticals where prices have increased 10-fold in recent years leading to concerns on affordability. The objective of this collection of studies was to reveal some of the hidden underlying causes of unequal access to the medicines. Another core issue is the growing proportion of out-of-pocket health spending in many world regions. In line with the joint efforts of the editors and authors we received an exceptionally high response worldwide. This E-Book attracted a total of 37 self-standing research submissions out of which 32 ultimately passed external peer review and got published. Base affiliations of the authors spread across academia, pharmaceutical and medical device industry, governmental authorities and clinical medicine. Their home institutions were situated in fifteen different countries inclusive of Japan, Israel, Russia, USA, Germany, Italy, Netherlands, Austria, Spain, Malta, Serbia, Poland, Bulgaria, Hungary and Malaysia. We frankly believe that authors succeeded to cover important literature gaps referring to these world regions. We solicit global professional audience to put our efforts to the test and read this contribution to the health economics literature.
Download or read book Research Anthology on Improving Health Literacy Through Patient Communication and Mass Media written by Management Association, Information Resources and published by IGI Global. This book was released on 2021-07-16 with total page 663 pages. Available in PDF, EPUB and Kindle. Book excerpt: Increasing health literacy among patients is a difficult task as medical jargon and healthcare directions can be overwhelming and difficult to comprehend. In today’s digital world, people are more connected than ever before and have the ability to find healthcare information in a way that was not possible in recent years. Mass media and social media have become particularly influential in conveying health information to the public. With the amount of misinformation being spread, coupled with poor health literacy skills, it is imperative that new strategies and policies are undertaken to ensure that patients and the general public receive accurate information and are appropriately educated in order to provide them with the best possible knowledge and care. The Research Anthology on Improving Health Literacy Through Patient Communication and Mass Media provides an overview of the importance of health literacy and the various means to achieve health literacy for patients using several strategies and elements such as patient communication and mass media. The book covers health awareness challenges that have been faced recently and historically and pushes for better patient-provider communication. The book also examines the use of social media, virtual support groups, and technological tools that aid in the facilitation of health knowledge. Covering a range of key topics such as patient safety, health illiteracy, and eHealth, this anthology is crucial for healthcare professionals, researchers, academicians, students, and those interested in understanding the importance of health literacy and how it connects to media and communication.
Download or read book Using Cost Effectiveness Analysis to Improve Health Care written by Peter J. Neumann and published by Oxford University Press. This book was released on 2004-10-28 with total page 224 pages. Available in PDF, EPUB and Kindle. Book excerpt: As health costs in the U.S. soar past $1.5 trillion, much evidence indicates that the nation does not get good value for its money. It is widely agreed that we could do better by using cost-effective analysis (CEA) to help determine which health care services are most worthwhile. American policy makers, however, have largely avoided using CEA, and researchers have devoted little attention to understanding why this is so. By considering the economic, social, legal, and ethical factors that contribute to the situation, and how they can be negotiated in the future, this book offers a unique perspective. It traces the roots of EA in health and medicine, describes its promise for rational resource allocation, and discusses the nature of the opposition to it, using Medicare and the Oregon health plans as examples. In exploring the disconnection between the promise of CEA and the persistent failure of rational intentions, the book seeks to find common ground and practical solutions. It analyzes the prospects for change and presents a roadmap for getting there. It offers pragmatic advice for cost-effectiveness analysts, discussing ways in which they can better translate their research findings into the basis for action. The book also offers advice for policy makers and politicians, including lessons from Europe, Canada, and Australia, and underlines the need for leadership to establish the conditions for change.
Download or read book OECD Health Policy Studies Pharmaceutical Innovation and Access to Medicines written by OECD and published by OECD Publishing. This book was released on 2018-11-29 with total page 192 pages. Available in PDF, EPUB and Kindle. Book excerpt: This report reviews the important role of medicines in health sytems, describes recent trends in pharmaceutical expenditure and financing, and summarises the approaches used by OECD countries to determine coverage and pricing.
Download or read book Communities in Action written by National Academies of Sciences, Engineering, and Medicine and published by National Academies Press. This book was released on 2017-04-27 with total page 583 pages. Available in PDF, EPUB and Kindle. Book excerpt: In the United States, some populations suffer from far greater disparities in health than others. Those disparities are caused not only by fundamental differences in health status across segments of the population, but also because of inequities in factors that impact health status, so-called determinants of health. Only part of an individual's health status depends on his or her behavior and choice; community-wide problems like poverty, unemployment, poor education, inadequate housing, poor public transportation, interpersonal violence, and decaying neighborhoods also contribute to health inequities, as well as the historic and ongoing interplay of structures, policies, and norms that shape lives. When these factors are not optimal in a community, it does not mean they are intractable: such inequities can be mitigated by social policies that can shape health in powerful ways. Communities in Action: Pathways to Health Equity seeks to delineate the causes of and the solutions to health inequities in the United States. This report focuses on what communities can do to promote health equity, what actions are needed by the many and varied stakeholders that are part of communities or support them, as well as the root causes and structural barriers that need to be overcome.
Download or read book Reaching Out to Rare Disease Patients Across Europe written by European Commission. Executive Agency for Health and Consumers and published by . This book was released on 2011 with total page pages. Available in PDF, EPUB and Kindle. Book excerpt: A rare disease is a life-threatening or chronic, debilitating disease that occurs infrequently or rarely in the general population. In the European Union (EU), a rare disease is defined as one occurring in less than 5 in 10,000 individuals. This apparently small number can mean as many as 250,000 sufferers of a distinct rare disease across the 27 Member States. For any given disease in a single country, the numbers may be quite small, leaving patients feeling isolated and vulnerable. Rare diseases are characterised not only by their low prevalence but by their heterogeneity and complexity. There is a genetic origin for at least 80 % of rare diseases and in 50 % of cases the onset occurs in childhood. The projects described in this booklet stem from the following texts which drive the European strategy on provisions for patients with rare diseases -- EU Bookshop.
Download or read book Public health challenges in post soviet countries during and beyond COVID 19 written by Yuliya Semenova and published by Frontiers Media SA. This book was released on 2023-10-31 with total page 191 pages. Available in PDF, EPUB and Kindle. Book excerpt:
Download or read book Scleroderma Best Approaches to Patient Care An Issue of Rheumatic Disease Clinics of North America E Book written by Tracy M. Frech and published by Elsevier Health Sciences. This book was released on 2023-04-11 with total page 321 pages. Available in PDF, EPUB and Kindle. Book excerpt: In this issue, guest editors bring their considerable expertise to this important topic. - Contains 15 practice-oriented topics including how treatment approaches should change when there is arthritis, myositis, and/or sicca syndrome; the roles of occupational therapy, physical therapy, wound care, and nutritional support; mental health considerations in patients with scleroderma; the best approaches to vaccination, bone health, and cancer screening; the best ways to teach the next generation of rheumatologists about scleroderma; and more. - Provides in-depth clinical reviews on scleroderma, offering actionable insights for clinical practice. - Presents the latest information on this timely, focused topic under the leadership of experienced editors in the field. Authors synthesize and distill the latest research and practice guidelines to create clinically significant, topic-based reviews.
Download or read book JIMD Reports Volume 44 written by Eva Morava and published by Springer. This book was released on 2019-01-07 with total page 117 pages. Available in PDF, EPUB and Kindle. Book excerpt: JIMD Reports publishes case and short research reports in the area of inherited metabolic disorders. Case reports highlight some unusual or previously unrecorded feature relevant to the disorder, or serve as an important reminder of clinical or biochemical features of a Mendelian disorder.
Download or read book Understanding Differences and Disorders of Sex Development DSD written by O. Hiort and published by Karger Medical and Scientific Publishers. This book was released on 2014-09-15 with total page 312 pages. Available in PDF, EPUB and Kindle. Book excerpt: Ten years ago a group of experts assembled in Chicago to develop a consensus on the management of conditions previously described as intersex. The consequences of this consensus have been far reaching, including a change in nomenclature, the development of greater collaboration across geographical boundaries, and a move towards greater involvement of patients and parents. Moreover, an international registry was established, as well as research and clinical networks. This book brings together a thorough overview on all these topics. Furthermore, the major technological advances in diagnostic genetic and biochemical capabilities over the past 10 years are outlined in detail. Offering a comprehensive update on various aspects of disorders of sex development (DSD), this book will be essential reading to all clinicians who are involved in delivering health care to patients with a DSD, as well as scientists involved in biomedical research related to DSD.
