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...

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Bibliographische Detailangaben
Veröffentlicht in:JMIR Med Inform
Hauptverfasser: 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
Format: Artigo
Sprache:Inglês
Veröffentlicht: JMIR Publications 2020
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Original Paper
Online Zugang:https://ncbi.nlm.nih.gov/pmc/articles/PMC7578818/
https://ncbi.nlm.nih.gov/pubmed/33026355
https://ncbi.nlm.nih.govhttp://dx.doi.org/10.2196/17420
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