Rare diseases and the assessment of intervention: What sorts of clinical trials can we use?

There is increasing emphasis on the importance of practising evidence-based medicine. Randomized controlled trials are the standard way to assess the bene¢ts of an intervention, and observational studies are not usually accorded much weight; the results are likely to be considered misleading. For...

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Autor principal: Wilcken, B.
Formato: Artículo
Lenguaje:Inglés
Publicado: Universidad de Belgrano - Documentos CEEGMD - Centro para el estudio de enfermedades genéticas, metabólicas y discapacidades. Facultad de Ciencias Exactas 2014
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Acceso en línea:http://repositorio.ub.edu.ar/handle/123456789/2886
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id I36-R142-123456789-2886
record_format dspace
institution Universidad de Belgrano
institution_str I-36
repository_str R-142
collection Repositorio Institucional - Universidad de Belgrano (UB)
language Inglés
topic Rare diseases
clinical trials
assessment of intervention
evaluación de las intervenciones
ensayos clínicos
enfermedades raras
spellingShingle Rare diseases
clinical trials
assessment of intervention
evaluación de las intervenciones
ensayos clínicos
enfermedades raras
Wilcken, B.
Rare diseases and the assessment of intervention: What sorts of clinical trials can we use?
topic_facet Rare diseases
clinical trials
assessment of intervention
evaluación de las intervenciones
ensayos clínicos
enfermedades raras
description There is increasing emphasis on the importance of practising evidence-based medicine. Randomized controlled trials are the standard way to assess the bene¢ts of an intervention, and observational studies are not usually accorded much weight; the results are likely to be considered misleading. For rare diseases, there are great dif¢culties in obtaining adequate evidence for interventions or for the bene¢ts of early diagnosis. This is because the disorders are not only very rare but also have variable expression, may have very long courses, and have incompletely known late effects; and surrogate end-points often have to be used. Randomized controlled trials are usually impossible because of inadequate power, and because there are preconceived notions of the effects of treatments already in use. The adoption of the best possible design for observational trials, formation of a central registry of such trials, and a greater general appreciation of the problems that rare diseases pose will help in obtaining the best possible evidence for the effects of interventions.
format Article
author Wilcken, B.
author_facet Wilcken, B.
author_sort Wilcken, B.
title Rare diseases and the assessment of intervention: What sorts of clinical trials can we use?
title_short Rare diseases and the assessment of intervention: What sorts of clinical trials can we use?
title_full Rare diseases and the assessment of intervention: What sorts of clinical trials can we use?
title_fullStr Rare diseases and the assessment of intervention: What sorts of clinical trials can we use?
title_full_unstemmed Rare diseases and the assessment of intervention: What sorts of clinical trials can we use?
title_sort rare diseases and the assessment of intervention: what sorts of clinical trials can we use?
publisher Universidad de Belgrano - Documentos CEEGMD - Centro para el estudio de enfermedades genéticas, metabólicas y discapacidades. Facultad de Ciencias Exactas
publishDate 2014
url http://repositorio.ub.edu.ar/handle/123456789/2886
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