作者
Michele Santoro, Alessio Coi, Michele Lipucci Di Paola, Anna Maria Bianucci, Sabina Gainotti, Emanuela Mollo, Domenica Taruscio, Luciano Vittozzi, Fabrizio Bianchi
发表日期
2015/2/7
来源
Public health genomics
卷号
18
期号
2
页码范围
113-122
出版商
S. Karger AG
简介
Background: The European Commission and Patients Organizations identify rare disease registries (RDRs) as strategic instruments to develop research and improve knowledge in the field of rare diseases. Interoperability between RDRs is needed for research activities, validation of therapeutic treatments, and public health actions. Sharing and comparing information requires a uniform and standardized way of data collection, so levels of interconnection between RDRs with similar aims and/or nature of data should be identified. The objective of this study is to define a classification and characterization of RDRs in order to identify different profiles and informative needs. Methods: Exploratory statistical analyses (cluster analysis and random forest) were applied to data derived from the EPIRARE project (‘Building Consensus and Synergies for the EU Rare Disease Patient Registration') survey …
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