Journal
CLINICAL PHARMACOLOGY & THERAPEUTICS
Volume 97, Issue 5, Pages 492-501Publisher
WILEY
DOI: 10.1002/cpt.83
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Funding
- Innovative Medicines Initiative Joint Undertaking [115303]
- European Union
- EFPIA companies
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Registries for rare diseases provide a tool for obtaining an overview of the clinical situation and can be used to discover points of improvement and to monitor long-term safety. Registries could also become a powerful tool to provide supporting information for marketing authorization. There is an urgent need for a pan-European or global strategy that supports consistent data. Therefore, transparency in data collection, harmonization of the database structures, and the convergence of scientific approaches are required.
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