Rare Diseases Epidemiology: Update and Overview

Rare Diseases Epidemiology: Update and Overview PDF Author: Manuel Posada de la Paz
Publisher: Springer
ISBN: 3319671448
Category : Medical
Languages : en
Pages : 675

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Book Description
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.

Rare Diseases Epidemiology: Update and Overview

Rare Diseases Epidemiology: Update and Overview PDF Author: Manuel Posada de la Paz
Publisher: Springer
ISBN: 3319671448
Category : Medical
Languages : en
Pages : 675

Get Book Here

Book Description
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.

Rare Diseases and Orphan Products

Rare Diseases and Orphan Products PDF Author: Institute of Medicine
Publisher: National Academies Press
ISBN: 0309158060
Category : Medical
Languages : en
Pages : 442

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Book Description
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.

NORD Guide to Rare Disorders

NORD Guide to Rare Disorders PDF Author: National Organization for Rare Disorders
Publisher: Lippincott Williams & Wilkins
ISBN: 9780781730631
Category : Medical
Languages : en
Pages : 982

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Book Description
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.

Oxford Textbook of Epilepsy and Epileptic Seizures

Oxford Textbook of Epilepsy and Epileptic Seizures PDF Author: Samden Lhatoo
Publisher: Oxford University Press, USA
ISBN: 0199659044
Category : Medical
Languages : en
Pages : 395

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Book Description
Part of the Oxford Textbooks in Clinical Neurology (OTCN) series, this volume covers the scientific basis, clinical diagnosis, and treatment of epilepsy and epileptic seizures, and is complemented by an online edition.

Rare Diseases Epidemiology

Rare Diseases Epidemiology PDF Author: Manuel Posada de la Paz
Publisher: Springer
ISBN: 9789048194841
Category : Medical
Languages : en
Pages : 542

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Book Description
In our etiologic research, we epidemiologists need to leave behind the concepts of ‘cohort’ study and ‘case–control’ study and adopt that of the etiologic study as the singular substitute for these. With this sentence, the famous epidemiologist Professor Olli S. Miettinen began his personal re ection on the future of the epidemiology [1]. He sought to highlight the fact that the role of the epidemiologist should be mainly focused on aetiological research. Nevertheless, the widespread idea still exists that epidemiology is limited to purely providing gures and descriptive data on the frequency and distribution of disease. Indeed, it is more than likely that the precise aim of those rst classic epidemiological steps, i. e. , methods essentially based on describing the distri- tion of a given disease, is still not all that well understood by many scientists, let alone the general public. Such descriptions seek to generate hypotheses and afford explanations for key factors (be these risk factors or the presumable causes th- selves), which might justify differences in terms of persons, time or place and, in turn, ultimately serve to develop preventive measures and/or gain quality-adjusted life years. To restrict the goals of epidemiology to activities exclusively concerned with reporting gures or even complex statistical results is a great mistake, one that renders it dif cult to take full advantage of the epidemiologist’s true role, which is “to study disease determinants and to assess the actual impact of factors involved in their development, distribution and dissemination”.

Communicating Rare Diseases and Disorders in the Digital Age

Communicating Rare Diseases and Disorders in the Digital Age PDF Author: Liliana Vale Costa
Publisher: Medical Information Science Reference
ISBN: 9781799820901
Category : Language Arts & Disciplines
Languages : en
Pages : 0

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Book Description
"This book explores the use of computer-mediated communication in rare diseases and disorders"--

Precision Public Health

Precision Public Health PDF Author: Tarun Weeramanthri
Publisher: Frontiers Media SA
ISBN: 2889455017
Category :
Languages : en
Pages : 149

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Book Description
Precision Public Health is a new and rapidly evolving field, that examines the application of new technologies to public health policy and practice. It draws on a broad range of disciplines including genomics, spatial data, data linkage, epidemiology, health informatics, big data, predictive analytics and communications. The hope is that these new technologies will strengthen preventive health, improve access to health care, and reach disadvantaged populations in all areas of the world. But what are the downsides and what are the risks, and how can we ensure the benefits flow to those population groups most in need, rather than simply to those individuals who can afford to pay? This is the first collection of theoretical frameworks, analyses of empirical data, and case studies to be assembled on this topic, published to stimulate debate and promote collaborative work.

Epidemiology of the Rheumatic Diseases

Epidemiology of the Rheumatic Diseases PDF Author: Alan J. Silman
Publisher:
ISBN:
Category : Medical
Languages : en
Pages : 528

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Book Description
This major reference work is the first comprehensive text to review in detail the data currently available on the epidemiology of the main rheumatic and muscoskeletal diseases. The problems of disease definition and criteria are considered with data on the occurrence of these diseases, both prevalence and incidence, and their variation with age, sex, geographical area, ethnic group, and trends over time. The results of epidemiological investigations,looking at both genetic and environmental risk factors, are considered and the impact of specific diseases of survival is also considered. Covering 15 disease areas from inflammatory joint disease and connective tissue disease to degenerative joint disease and non articular conditions, such as low back pain and carpel tunnel syndrome, this is the only text available which offers full coverage of the subject with a truly international perspective.

Analysis of Cancer Risks in Populations Near Nuclear Facilities

Analysis of Cancer Risks in Populations Near Nuclear Facilities PDF Author: National Research Council
Publisher: National Academies Press
ISBN: 0309255716
Category : Medical
Languages : en
Pages : 424

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Book Description
In the late 1980s, the National Cancer Institute initiated an investigation of cancer risks in populations near 52 commercial nuclear power plants and 10 Department of Energy nuclear facilities (including research and nuclear weapons production facilities and one reprocessing plant) in the United States. The results of the NCI investigation were used a primary resource for communicating with the public about the cancer risks near the nuclear facilities. However, this study is now over 20 years old. The U.S. Nuclear Regulatory Commission requested that the National Academy of Sciences provide an updated assessment of cancer risks in populations near USNRC-licensed nuclear facilities that utilize or process uranium for the production of electricity. Analysis of Cancer Risks in Populations near Nuclear Facilities: Phase 1 focuses on identifying scientifically sound approaches for carrying out an assessment of cancer risks associated with living near a nuclear facility, judgments about the strengths and weaknesses of various statistical power, ability to assess potential confounding factors, possible biases, and required effort. The results from this Phase 1 study will be used to inform the design of cancer risk assessment, which will be carried out in Phase 2. This report is beneficial for the general public, communities near nuclear facilities, stakeholders, healthcare providers, policy makers, state and local officials, community leaders, and the media.

Epidemiology Foundations

Epidemiology Foundations PDF Author: Peter J. Fos
Publisher: John Wiley & Sons
ISBN: 047040289X
Category : Medical
Languages : en
Pages : 306

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Book Description
Written by Peter J. Fos an expert in epidemiology with more than twenty years teaching experience Epidemiology Foundations offers an ideal introduction to the theory and practice of public health epidemiology. This important text discusses both the historical perspective and future trends of epidemiology, reviews health and disease, and explains how they are measured. The book's overview of epidemiological studies shows how they are used in practice. Epidemiology Foundations takes a social and community perspective and includes information about global diseases and epidemics. Emphasis on concepts such as population health, social determinants, and global health make this book especially interesting and accessible to those new to the subject. Each chapter is supplemented with problem-solving exercises and research assignments to aid readers in understanding its epidemiology principles. Reflecting and expanding on recommendations of the Association of American Colleges and Universities, Epidemiology Foundations is the ideal text for any course introducing epidemiology in public health.