title: The growing number of hemophilia registries: Quantity vs. quality.
abstract: 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.
authors: Paul-Ehrlich-Institute, Federal Institute for Vaccines and Biomedicines, Hematology, Langen, Germany.
authors: C
authors: C
authors: Keipert
authors: J
authors: J
authors: Hesse
authors: B
authors: B
authors: Haschberger
authors: M
authors: M
authors: Heiden
authors: R
authors: R
authors: Seitz
authors: H M
authors: HM
authors: van den Berg
authors: A
authors: A
authors: Hilger
mesh_terms: D022126:Access to Information; D003628:Database Management Systems; D016208:Databases, Factual / Q000592:standards; D019317:Evidence-Based Medicine / Q000379:methods* / Q000592:standards; D017408:Guidelines as Topic; D006467:Hemophilia A / Q000175:diagnosis / Q000453:epidemiology / Q000628:therapy; D006801:Humans; D012042:Registries / Q000592:standards