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Development of an Interactive Dashboard for OSSE Rare Disease Registries
Jessica Vasseur, Axel Zieschank, Jens Göbel, Jannik Schaaf, Mareike Dahmer-Heath, Jens König, Dennis Kadioglu, Holger Storf
187 - 188
10.3233/SHTI220367
Research Article
Studies in Health Technology and Informatics
Volume 293: dHealth 2022
Abstract

Background:

The Open Source Registry System for Rare Diseases (OSSE), a web-based tool to create rare disease patient registries, currently offers no possibility to view aggregated registry data within the system. Here, we present the development and implementation of a dashboard for the registry of the German NEOCYST (Network for early onset cystic kidney diseases) consortium.

Methods:

Based on user requirements from NEOCYST, we developed a general dashboard for all OSSE registries, which was extended with NEOCYST-specific statistics.

Results:

The dashboard now allows users to gain a quick overview of key data, such as patient counts or the availability of biospecimens.

Conclusion:

This work represents a first prototypical approach for an OSSE dashboard, demonstrated in an existing rare disease registry, to be further evaluated and enhanced in the future.

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