A Global Approach to Rare Diseases Research and Orphan Products Development: The International Rare Diseases Research Consortium (IRDiRC).
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DOI: 10.1007/978-3-319-67144-4_20
Abstract: Rare diseases present unique challenges to researchers due to the global distribution of patients, complexity and low prevalence of each disease, and limited availability of data. They are also overwhelming and costly for patients, their… read more here.
Keywords: rare diseases; diseases research; research consortium; irdirc ... See more keywords
Factors Influencing the Generation of Evidence from Simple Data Held in International Rare Disease Patient Registries
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DOI: 10.1007/s40290-019-00316-w
Abstract: Background Rare diseases (defined as affecting  read more here.
Keywords: patient registries; rare disease; disease; evidence ... See more keywords
The International Rare Diseases Research Consortium: Policies and Guidelines to maximize impact
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DOI: 10.1038/s41431-017-0008-z
Abstract: The International Rare Diseases Research Consortium (IRDiRC) has agreed on IRDiRC Policies and Guidelines, following extensive deliberations and discussions in 2012 and 2013, as a first step towards improving coordination of research efforts worldwide. The… read more here.
Keywords: research; consortium; rare diseases; diseases research ... See more keywords