Items related to Rare Diseases Epidemiology: 686 (Advances in Experimental...
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".
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This inclusive text is the first publication to address rare diseases as a public health problem. The work analyzes the constraints on epidemiological research at the same time as supplying solutions. It organizes the data by rare diseases groups.
From the reviews:
“It covers the common components of epidemiology and its collaborating disciplines to demonstrate the concepts, methods, and examples of the epidemiology of rare diseases. ... it is a useful resource for epidemiologists, the book can be used by other researchers and by funding agencies, foundations, and policy makers. ... This is an important state-of-the-art book in rare disease epidemiology. ... an extremely important contribution to the field and will be a useful reference in several disciplines.” (James C. Torner, Doody’s Review Service, July, 2011)
“The book is very well written, and deals with its subject delineated above comprehensively. ... the amount of information presented is very impressive. The multitude of the data presented in the reviewed work make it indispensable for anyone potentially active in the field of the rare diseases ... . this volume will remain the major reference book for quite some time, and highly recommend it to the healthcare planners, general practitioners and those specializing in the field of the rare diseases ... .” (K. Pagava and I. Paghava, Georgian Medical News, Vol. 193 (4), 2011)
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- PublisherSpringer
- Publication date2012
- ISBN 10 9400733380
- ISBN 13 9789400733381
- BindingPaperback
- Number of pages564
- EditorPosada De La Paz Manuel, Groft Stephen C.
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