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Title Rare diseases epidemiology / Manuel Posada de la Paz, Stephen C. Groft, editors
Published Dordrecht ; New York : Springer, [2010]
©2010
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Description 1 online resource (xxii, 542 pages) : illustrations
Series Advances in experimental medicine and biology, 0065-2598 ; v. 686
Advances in experimental medicine and biology ; v. 686
Contents Rare diseases-avoiding misperceptions and establishing realities : the need for reliable epidemiological data / Stephen C. Groft and Manuel Posada de la Paz -- Rare diseases epidemiology research / Manuel Posada de la Paz [and others] -- Evidence-based medicine and rare diseases / Simon Day -- Prevention, diagnosis, and services / Eva Bermejo and María Luisa Martínez-Frías -- The importance of case reports in advancing scientific knowledge of rare diseases / John C. Carey -- Patient registries : utility, validity, and inference / Rachel Richesson and Kendra Vehik -- Biobanking in rare disorders / Hanns Lochmüller and Peter Schneiderat -- Evaluation of the validity and utility of genetic testing for rare diseases / Scott D. Grosse, Lisa Kalman, and Muin J. Khoury -- Population-based surveillance for rare congenital and inherited disorders : models and challenges / Jodi M. Jackson, Krista S. Crider, and Richard S. Olney -- Statistical methods for the geographical analysis of rare diseases / Virgilio Gómez-Rubio and Antonio López-Quílez -- Clinical trials and rare diseases / Joachim Werner Otto Gerss and Wolfgang Köpcke -- A regulatory overview about rare diseases / Jordi Llinares -- Economic considerations in the provision of treatments for rare diseases / Christopher McCabe, Richard Edlin, and Jeff Round -- Rare diseases social epidemiology : analysis of inequalities / Anna Kole and François Faurisson -- Quality of life and rare diseases / Luis Rajmil, Lilisbeth Perestelo-Pérez, and Michael Herdman -- Cost of illness and economic evaluation in rare diseases / Julio López-Bastida and Juan Oliva-Moreno -- The burden of rare cancers in Europe / Gemma Gatta [and others] -- Hereditary channelopathies in neurology / Karin Jurkat-Rott [and others] -- Osteochondral diseases and fibrodysplasia ossificans progressiva / Antonio Morales-Piga and Frederick S. Kaplan -- The prevalence of congenital anomalies in Europe / Helen Dolk, Maria Loane, and Ester Garne -- Rare autoimmune diseases / Arrigo Schieppati and Erica Daina -- Epidemiology of rare anaemias in Europe / Beatrice Gulbis [and others] -- Inherited metabolic rare disease / Teresa Pampols -- The contribution of rare diseases to understanding the epidemiology of neurodevelopmental disabilities / Diana Schendel, Catherine Rice, and Christopher Cunniff -- Creating a European Union framework for actions in the field of rare diseases / Antoni Montserrat Moliner -- National plans and strategies on rare diseases in Europe / Domenica Taruscio, Luciano Vittozzi, and Rumen Stefanov -- Ethical aspects on rare diseases / Luis A. Barrera and Gilberto Cely Galindo -- Advocacy groups and their role in rare diseases research / Mary Dunkle, Wayne Pines, and Peter L. Saltonstall
Summary "The Rare Diseases Epidemiology" book is a comprehensive text focused on the rare disease field where both general epidemiological methods and specific methods for low prevalence diseases are discussed. This is the first book to address rare diseases as a public health problem where the epidemiological research constrains are analyzed and at the same time, solutions and also data by rare diseases groups are provided. This book is probably a starting point for developing better future epidemiological research programs on rare diseases, and also research strategies in fields such as he
Bibliography Includes bibliographical references and index
Subject Rare diseases -- Epidemiology.
Epidemiology.
Rare Diseases -- epidemiology.
Form Electronic book
Author Posada de la Paz, Manuel.
Groft, Stephen C.
LC no. 2010933647 2010933644
ISBN 9789048194858 (electronic bk.)
9048194857 (electronic bk.)
9789048194841 (print)
9048194849 (print)