The growing number of hemophilia registries: Quantity vs. quality

C Keipert; J Hesse; B Haschberger; M Heiden; R Seitz; H M van den Berg; A Hilger

doi:10.1002/cpt.83

The growing number of hemophilia registries: Quantity vs. quality

C Keipert, J Hesse, B Haschberger, M Heiden, R Seitz, H M van den Berg, A Hilger,

Research output: Contribution to journal › Article › Academic › peer-review

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.

Original language	English
Pages (from-to)	492-501
Number of pages	10
Journal	Clinical Pharmacology & Therapeutics
Volume	97
Issue number	5
DOIs	https://doi.org/10.1002/cpt.83
Publication status	Published - 2015

Keywords

Access to Information
Database Management Systems
Databases, Factual
Evidence-Based Medicine
Guidelines as Topic
Hemophilia A
Humans
Registries

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10.1002/cpt.83

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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.",

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author = "C Keipert and J Hesse and B Haschberger and M Heiden and R Seitz and {van den Berg}, {H M} and A Hilger",

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AU - Keipert, C

AU - Hesse, J

AU - Haschberger, B

AU - Heiden, M

AU - Seitz, R

AU - van den Berg, H M

AU - Hilger, A

PY - 2015

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KW - Access to Information

KW - Database Management Systems

KW - Databases, Factual

KW - Evidence-Based Medicine

KW - Guidelines as Topic

KW - Hemophilia A

KW - Humans

KW - Registries

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JF - Clinical Pharmacology & Therapeutics

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ER -

The growing number of hemophilia registries: Quantity vs. quality

Abstract

Keywords

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