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Enabling External Inquiries to an Existing Patient Registry by Using the Open Source Registry System for Rare Diseases: Demonstration of the System Using the European Society for Immunodeficiencies Registry
BACKGROUND: The German Network on Primary Immunodeficiency Diseases (PID-NET) utilizes the European Society for Immunodeficiencies (ESID) registry as a platform for collecting data. In the context of PID-NET data, we show how registries based on custom software can be made interoperable for better c...
Autores principales: | Scheible, Raphael, Kadioglu, Dennis, Ehl, Stephan, Blum, Marco, Boeker, Martin, Folz, Michael, Grimbacher, Bodo, Göbel, Jens, Klein, Christoph, Nieters, Alexandra, Rusch, Stephan, Kindle, Gerhard, Storf, Holger |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
JMIR Publications
2020
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7578818/ https://www.ncbi.nlm.nih.gov/pubmed/33026355 http://dx.doi.org/10.2196/17420 |
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