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Titlebook: Rare Diseases Epidemiology; Manuel Posada de la Paz,Stephen C. Groft Book 2010Latest edition Springer Science+Business Media B.V. 2010 Bio

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Joachim Werner Otto Gerß,Wolfgang Köpcke PhD. Prof.As an interdisciplinary tool, it will provide practical, authoritative information both for those involved in crime and security studies, as well as those from related disciplines who increasingly need to consider security as part of their work, such as police studies, counterterrorism, urban planni
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Rare Diseases – Avoiding Misperceptions and Establishing Realities: The Need for Reliable Epidemiolos to clinical trials at multi-national research sites with common protocols and multi-disciplinary research teams. Providing ready access to the information about rare diseases, patient advocacy groups, research studies and products in research protocols will continue to improve the lives of patient
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Prevention, Diagnosis and Services prevention measures regarding congenital anomalies are also detailed. To this respect, the benefits derived from the activity of Teratology Information Services (TIS), for the general population as well as for health care providers, are explained. It is finally emphasized how the epidemiological da
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The Importance of Case Reports in Advancing Scientific Knowledge of Rare Diseases this chapter the author will review and summarize the debate around the scientific publication of case reports in the context of the study of rare diseases and will present a taxonomy that ideally will encourage further dialogue on the topic. Future research on the importance of case reports in adv
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Clinical Trials and Rare Diseasesscope of the former approach, (Bayesian) adaptive randomisation, group sequential (adaptive) designs, repeated measurement designs for longitudinal data, and meta-analyses are illustrated and discussed. The latter approach comprises alternative strategies such as (non-randomised) risk-based allocati
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A Regulatory Overview About Rare Diseaseslity (conditional marketing authorisation, exceptional circumstances authorisation). In the future more initiatives will have to address the need for networking scientific knowledge and research capabilities to address the difficulties to generate data in rare diseases.
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