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2010, ISBN: 9048194849

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2010, ISBN: 9048194849

[EAN: 9789048194841], [SC: 3.0], [PU: Dordrecht, Springer.], INNERE MEDIZIN, xxii, 542 p. Hardcover. Versand aus Deutschland / We dispatch from Germany via Air Mail. Einband bestoßen, dah… Altro …

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Dettagli del libro
Rare Diseases Epidemiology
Autore:
Titolo:
ISBN:

9048194849


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 health planning and decision making, which will be able to promote not only new knowledge but also capacity building for policy makers. Epidemiology is always mentioned in all rare diseases policy documents as an important topic but a comprehensive book on this discipline applied to rare diseases, had never been written before.

Informazioni dettagliate del libro - Rare Diseases Epidemiology


EAN (ISBN-13): 9789048194841
ISBN (ISBN-10): 9048194849
Copertina rigida
Anno di pubblicazione: 2010
Editore: Springer-Verlag GmbH
542 Pagine
Peso: 0,984 kg
Lingua: eng/Englisch

Libro nella banca dati dal 2008-03-10T17:35:59+01:00 (Zurich)
Pagina di dettaglio ultima modifica in 2024-02-14T21:32:31+01:00 (Zurich)
ISBN/EAN: 9048194849

ISBN - Stili di scrittura alternativi:
90-481-9484-9, 978-90-481-9484-1
Stili di scrittura alternativi e concetti di ricerca simili:
Autore del libro : posada, paz, stephen, manuel, grof, groft
Titolo del libro: none these diseases, epidemiology

Dati dell'editore

Autore: Manuel Posada de la Paz; Stephen C. Groft
Titolo: Advances in Experimental Medicine and Biology; Rare Diseases Epidemiology
Editore: Springer; Springer Netherland
542 Pagine
Anno di pubblicazione: 2010-09-18
Dordrecht; NL
Stampato / Fatto in
Peso: 2,130 kg
Lingua: Inglese
299,59 € (DE)
307,99 € (AT)
308,00 CHF (CH)
Not available, publisher indicates OP

BB; Book; Hardcover, Softcover / Medizin/Allgemeines; Epidemiologie und medizinische Statistik; Health Economics; Human Genetic; epidemiological methods; social epidemiology; prevention; epidemiology; cancer; Biobank; Epidemiologic Research; Rare Diseases; Orphan Drugs; Public Health; epidemiological; public health problem; B; Epidemiology; Biomedical and Life Sciences; Human Genetics; Health Promotion and Disease Prevention; Genetik, Medizin; Public Health und Präventivmedizin; BC; EA

'Rare Diseases Epidemiology' offers numerous approaches to increase the knowledge base of rare diseases and conditions and to facilitate the development and dissemination of interventions for the prevention, diagnosis, or treatment of over 6500 diseases and conditions. The goals of epidemiology are not restricted merely to providing numerical data on the prevalence or incidence of diseases in a limited or general population. Analyses of epidemiological data gathered from appropriately designed and conducted studies are required to establish public health policies and priorities in all nations. Information gained from these studies lead to a better understanding of the etiology and the impact of genetic or environmental factors on the occurrence and outcome of these disorders. The term Rare Diseases includes both acquired and inherited disorders. 'Rare Diseases Epidemiology' provides methods and approaches from the collective experiences of established research investigators who address these significant issues of the development of patient registries; the collection, storage and selected distribution of bio-specimens from bio-banking activities; the validation and utilization of genetic testing and newborn screening procedures; the presentation of issues related to the importance of case reports to increase knowledge of rare diseases; the challenges and models for population-based surveillance studies for rare congenital and inherited disorders; the statistical methods for the geographical analyses of rare diseases; the value and need for clinical trials and comparative effective studies; and meeting the requirements of regulatory agencies. Economic, societal, and ethical concerns are presented as patients and families encounter difficulties obtaining the correct diagnosis, gaining access to treatments, and receiving coverage or reimbursement for approved interventions, and for developing a public understanding of the costs to patients and their families and the burden of illness affecting the quality of life of millions of patients with rare diseases and conditions. Framework programs for rare diseases research as developed by the European Union and the value of national plans for individual member countries are discussed and represent the public commitment to patients with rare diseases. Likewise, similar programs have been implemented in the USA as a result of the Orphan Drug Act to address the needs of the rare diseases community.
It is the first book edited on Rare Diseases Epidemiology Develops a comprehensive approach to the rare diseases epidemiological problems Teach the best knowledge currently available Opens future perspectives for health planning and decision making Provides a general framework for physicians, public health experts and basic researchers

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