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See 1 citation in 2015 by Keipert C:

Clin Pharmacol Ther. 2015 May;97(5):492-501. doi: 10.1002/cpt.83. Epub 2015 Apr 3.

The growing number of hemophilia registries: Quantity vs. quality.

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Paul-Ehrlich-Institute, Federal Institute for Vaccines and Biomedicines, Hematology, Langen, Germany.


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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[Indexed for MEDLINE]

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