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

Autor: Keipert, C, Hesse, J, Haschberger, B, Heiden, M, Seitz, R, van den Berg, HM, Hilger, A
Předmět:
Zdroj: Clinical Pharmacology & Therapeutics; May2015, Vol. 97 Issue 5, p492-501, 10p
Abstrakt: 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. [ABSTRACT FROM AUTHOR]
Databáze: Complementary Index