Recommendations for Improving the Quality of Rare Disease Registries

Recommendations for Improving the Quality of Rare Disease Registries

Rare diseases (RD) patient registries are powerful instruments that help develop clinical research, facilitate the planning of appropriate clinical trials, improve patient care, and support healthcare management. They constitute a key information system that supports the activities of European Refer...

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Bibliographic Details
Main Authors: Yllka Kodra, Jérôme Weinbach, Manuel Posada-de-la-Paz, Alessio Coi, S. Lydie Lemonnier, David van Enckevort, Marco Roos, Annika Jacobsen, Ronald Cornet, S. Faisal Ahmed, Virginie Bros-Facer, Veronica Popa, Marieke Van Meel, Daniel Renault, Rainald von Gizycki, Michele Santoro, Paul Landais, Paola Torreri, Claudio Carta, Deborah Mascalzoni, Sabina Gainotti, Estrella Lopez, Anna Ambrosini, Heimo Müller, Robert Reis, Fabrizio Bianchi, Yaffa R. Rubinstein, Hanns Lochmüller, Domenica Taruscio
Format: Article
Language:English
Published: MDPI AG 2018-08-01
Series:International Journal of Environmental Research and Public Health
Subjects:
rare diseases
patient registry
quality
Online Access:http://www.mdpi.com/1660-4601/15/8/1644

Internet

http://www.mdpi.com/1660-4601/15/8/1644

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