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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Detalhes bibliográficos
Publicado no:Int J Environ Res Public Health
Main Authors: Kodra, Yllka, Weinbach, Jérôme, Posada-de-la-Paz, Manuel, Coi, Alessio, Lemonnier, S. Lydie, van Enckevort, David, Roos, Marco, Jacobsen, Annika, Cornet, Ronald, Ahmed, S. Faisal, Bros-Facer, Virginie, Popa, Veronica, Van Meel, Marieke, Renault, Daniel, von Gizycki, Rainald, Santoro, Michele, Landais, Paul, Torreri, Paola, Carta, Claudio, Mascalzoni, Deborah, Gainotti, Sabina, Lopez, Estrella, Ambrosini, Anna, Müller, Heimo, Reis, Robert, Bianchi, Fabrizio, Rubinstein, Yaffa R., Lochmüller, Hanns, Taruscio, Domenica
Formato: Artigo
Idioma:Inglês
Publicado em: MDPI 2018
Assuntos:
Review
Acesso em linha:https://ncbi.nlm.nih.gov/pmc/articles/PMC6121483/
https://ncbi.nlm.nih.gov/pubmed/30081484
https://ncbi.nlm.nih.govhttp://dx.doi.org/10.3390/ijerph15081644
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