Rare diseases epidemiology
著者
書誌事項
Rare diseases epidemiology
(Advances in experimental medicine and biology, v. 686)
Springer, c2010
大学図書館所蔵 全4件
  青森
  岩手
  宮城
  秋田
  山形
  福島
  茨城
  栃木
  群馬
  埼玉
  千葉
  東京
  神奈川
  新潟
  富山
  石川
  福井
  山梨
  長野
  岐阜
  静岡
  愛知
  三重
  滋賀
  京都
  大阪
  兵庫
  奈良
  和歌山
  鳥取
  島根
  岡山
  広島
  山口
  徳島
  香川
  愛媛
  高知
  福岡
  佐賀
  長崎
  熊本
  大分
  宮崎
  鹿児島
  沖縄
  韓国
  中国
  タイ
  イギリス
  ドイツ
  スイス
  フランス
  ベルギー
  オランダ
  スウェーデン
  ノルウェー
  アメリカ
注記
Includes bibliographical references and index
内容説明・目次
内容説明
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".
目次
Rare Diseases.- Rare Diseases - Avoiding Misperceptions and Establishing Realities: The Need for Reliable Epidemiological Data.- Methods and Approaches.- Rare Diseases Epidemiology Research.- Evidence-Based Medicine and Rare Diseases.- Prevention, Diagnosis and Services.- The Importance of Case Reports in Advancing Scientific Knowledge of Rare Diseases.- Patient Registries: Utility, Validity and Inference.- Biobanking in Rare Disorders.- Evaluation of the Validity and Utility of Genetic Testing for Rare Diseases.- Population-Based Surveillance for Rare Congenital and Inherited Disorders: Models and Challenges.- Statistical Methods for the Geographical Analysis of Rare Diseases.- Clinical Trials and Rare Diseases.- Pharmacoepidemiology.- A Regulatory Overview About Rare Diseases.- Economics and Social Epidemiology.- Economic Considerations in the Provision of Treatments for Rare Diseases.- Rare Diseases Social Epidemiology: Analysis of Inequalities.- Quality of Life and Rare Diseases.- Cost of Illness and Economic Evaluation in Rare Diseases.- Epidemiology of Group of Rare Diseases.- The Burden of Rare Cancers in Europe.- Hereditary Channelopathies in Neurology.- Osteochondral Diseases and Fibrodysplasia Ossificans Progressiva.- The Prevalence of Congenital Anomalies in Europe.- Rare Autoimmune Diseases.- Epidemiology of Rare Anaemias in Europe.- Inherited Metabolic Rare Disease.- The Contribution of Rare Diseases to Understanding the Epidemiology of Neurodevelopmental Disabilities.- Policy and Ethics Issues in Rare Diseases.- Creating a European Union Framework for Actions in the Field of Rare Diseases.- National Plans and Strategies on Rare Diseases in Europe.- Ethical Aspects on Rare Diseases.- Patient Organizations Role.- Advocacy Groups and Their Role in Rare Diseases Research.
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