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Rare Diseases Epidemiology: Update and Overview by Manuel Posada de la Paz,Domenica Taruscio,Stephen C. Groft Pdf
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.
Author : Manuel Posada de la Paz,Stephen C. Groft Publisher : Springer Page : 542 pages File Size : 43,7 Mb Release : 2010-09-18 Category : Medical ISBN : 9048194849
Rare Diseases Epidemiology by Manuel Posada de la Paz,Stephen C. Groft Pdf
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”.
Institute of Medicine,Board on Health Sciences Policy,Committee on Accelerating Rare Diseases Research and Orphan Product Development
Author : Institute of Medicine,Board on Health Sciences Policy,Committee on Accelerating Rare Diseases Research and Orphan Product Development Publisher : National Academies Press Page : 442 pages File Size : 54,9 Mb Release : 2011-04-03 Category : Medical ISBN : 9780309158060
Rare Diseases and Orphan Products by Institute of Medicine,Board on Health Sciences Policy,Committee on Accelerating Rare Diseases Research and Orphan Product Development Pdf
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 by National Organization for Rare Disorders Pdf
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.
Author : Manuel Posada de la Paz,Stephen C. Groft Publisher : Springer Page : 542 pages File Size : 53,5 Mb Release : 2012-11-07 Category : Medical ISBN : 9400733380
Rare Diseases Epidemiology by Manuel Posada de la Paz,Stephen C. Groft Pdf
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”.
Registries for Evaluating Patient Outcomes by Agency for Healthcare Research and Quality/AHRQ Pdf
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.
Epidemiology and Prevention of Vaccine-Preventable Diseases, 13th Edition E-Book by Jennifer Hamborsky, MPH, MCHES,Andrew Kroger, MD, MPH,Charles (Skip) Wolfe Pdf
The Public Health Foundation (PHF) in partnership with the Centers for Disease Control and Prevention (CDC) is pleased to announce the availability of Epidemiology and Prevention of Vaccine-Preventable Diseases, 13th Edition or “The Pink Book” E-Book. This resource provides the most current, comprehensive, and credible information on vaccine-preventable diseases, and contains updated content on immunization and vaccine information for public health practitioners, healthcare providers, health educators, pharmacists, nurses, and others involved in administering vaccines. “The Pink Book E-Book” allows you, your staff, and others to have quick access to features such as keyword search and chapter links. Online schedules and sources can also be accessed directly through e-readers with internet access. Current, credible, and comprehensive, “The Pink Book E-Book” contains information on each vaccine-preventable disease and delivers immunization providers with the latest information on: Principles of vaccination General recommendations on immunization Vaccine safety Child/adult immunization schedules International vaccines/Foreign language terms Vaccination data and statistics The E-Book format contains all of the information and updates that are in the print version, including: · New vaccine administration chapter · New recommendations regarding selection of storage units and temperature monitoring tools · New recommendations for vaccine transport · Updated information on available influenza vaccine products · Use of Tdap in pregnancy · Use of Tdap in persons 65 years of age or older · Use of PCV13 and PPSV23 in adults with immunocompromising conditions · New licensure information for varicella-zoster immune globulin Contact [email protected] for more information. For more news and specials on immunization and vaccines visit the Pink Book's Facebook fan page
Dean T. Jamison,Hellen Gelband,Susan Horton,Prabhat Jha,Charles N. Mock,Rachel Nugent
Author : Dean T. Jamison,Hellen Gelband,Susan Horton,Prabhat Jha,Charles N. Mock,Rachel Nugent Publisher : World Bank Publications Page : 426 pages File Size : 47,5 Mb Release : 2017-12-06 Category : Medical ISBN : 9781464805288
Disease Control Priorities, Third Edition (Volume 9) by Dean T. Jamison,Hellen Gelband,Susan Horton,Prabhat Jha,Charles N. Mock,Rachel Nugent Pdf
As the culminating volume in the DCP3 series, volume 9 will provide an overview of DCP3 findings and methods, a summary of messages and substantive lessons to be taken from DCP3, and a further discussion of cross-cutting and synthesizing topics across the first eight volumes. The introductory chapters (1-3) in this volume take as their starting point the elements of the Essential Packages presented in the overview chapters of each volume. First, the chapter on intersectoral policy priorities for health includes fiscal and intersectoral policies and assembles a subset of the population policies and applies strict criteria for a low-income setting in order to propose a "highest-priority" essential package. Second, the chapter on packages of care and delivery platforms for universal health coverage (UHC) includes health sector interventions, primarily clinical and public health services, and uses the same approach to propose a highest priority package of interventions and policies that meet similar criteria, provides cost estimates, and describes a pathway to UHC.
Precision Public Health by Tarun Weeramanthri,Hugh Dawkins,Gareth Baynam,Matthew Bellgard,Ori Gudes,James Semmens Pdf
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.
National Research Council,Division on Earth and Life Studies,Nuclear and Radiation Studies Board,Committee on the Analysis of Cancer Risks in Populations near Nuclear Facilitiesâ¬"Phase I
Author : National Research Council,Division on Earth and Life Studies,Nuclear and Radiation Studies Board,Committee on the Analysis of Cancer Risks in Populations near Nuclear Facilitiesâ¬"Phase I Publisher : National Academies Press Page : 424 pages File Size : 44,5 Mb Release : 2012-06-29 Category : Medical ISBN : 9780309255714
Analysis of Cancer Risks in Populations Near Nuclear Facilities by National Research Council,Division on Earth and Life Studies,Nuclear and Radiation Studies Board,Committee on the Analysis of Cancer Risks in Populations near Nuclear Facilitiesâ¬"Phase I Pdf
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.
CDC Yellow Book 2018: Health Information for International Travel by Centers for Disease Control and Prevention CDC Pdf
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.
Oxford Textbook of Epilepsy and Epileptic Seizures by Samden Lhatoo Pdf
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.
Canadian Immunization Guide by Canada. Comité consultatif national de l'immunisation,Canada. National Advisory Committee on Immunization Pdf
The seventh edition of the Canadian Immunization Guide was developed by the National Advisory Committee on Immunization (NACI), with the support ofthe Immunization and Respiratory Infections Division, Public Health Agency of Canada, to provide updated information and recommendations on the use of vaccines in Canada. The Public Health Agency of Canada conducted a survey in 2004, which confi rmed that the Canadian Immunization Guide is a very useful and reliable resource of information on immunization.
Author : O. S. Miettinen Publisher : Springer Science & Business Media Page : 175 pages File Size : 54,9 Mb Release : 2011-04-22 Category : Medical ISBN : 9789400711716
Epidemiological Research: Terms and Concepts by O. S. Miettinen Pdf
The book is organized so as to address in separate sections first the preparatory topics of medicine (clinical and epidemiological), science in general, and statistics (mathematical); then topics of epidemiological research proper; and, finally, topics of ‘meta-epidemiological’ clinical research. In those two main sections, a further grouping is based on the distraction between objects and methods of study. In this framework, the particular topics are addressed both descriptively and quasi-prescriptively, commonly with a number of explicatory annotations. This book is intended to serve as a handbook for whomever is, in whatever way, concerned with epidemiological or ‘meta-epidemiological’ clinical research. But besides this, it is also intended to serve as a textbook for students in introductory courses on ‘epidemiological’ research – to which end there is a suggested hierarchy of the concepts that might reasonably be covered.
National Research Council,Division on Earth and Life Studies,Commission on Life Sciences,Committee on Diet and Health
Author : National Research Council,Division on Earth and Life Studies,Commission on Life Sciences,Committee on Diet and Health Publisher : National Academies Press Page : 765 pages File Size : 53,9 Mb Release : 1989-01-01 Category : Medical ISBN : 9780309039949
Diet and Health by National Research Council,Division on Earth and Life Studies,Commission on Life Sciences,Committee on Diet and Health Pdf
Diet and Health examines the many complex issues concerning diet and its role in increasing or decreasing the risk of chronic disease. It proposes dietary recommendations for reducing the risk of the major diseases and causes of death today: atherosclerotic cardiovascular diseases (including heart attack and stroke), cancer, high blood pressure, obesity, osteoporosis, diabetes mellitus, liver disease, and dental caries.