Using a meta-narrative literature review and focus groups with key stakeholders to identify perceived challenges and solutions for generating robust evidence on the effectiveness of treatments for rare diseases

Abstract Introduction For many rare diseases, strong analytic study designs for evaluating the efficacy and effectiveness of interventions are challenging to implement because of small, geographically dispersed patient populations and underlying clinical heterogeneity. The objective of this study wa...

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主要な著者:	Kylie Tingley, Doug Coyle, Ian D. Graham, Lindsey Sikora, Pranesh Chakraborty, Kumanan Wilson, John J. Mitchell, Sylvia Stockler-Ipsiroglu, Beth K. Potter, in collaboration with the Canadian Inherited Metabolic Diseases Research Network
フォーマット:	Artigo
言語:	Inglês
出版事項:	BMC 2018-06-01
シリーズ:	Orphanet Journal of Rare Diseases
主題:	Rare diseases Evidence generation Comparative effectiveness Patient-oriented outcomes Evidence synthesis Research methods
オンライン･アクセス:	http://link.springer.com/article/10.1186/s13023-018-0851-1
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