Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2022 May 16:293:187-188.
doi: 10.3233/SHTI220367.

Development of an Interactive Dashboard for OSSE Rare Disease Registries

Jessica Vasseur  1 , Axel Zieschank  1 , Jens Göbel  1 , Jannik Schaaf  1 , Mareike Dahmer-Heath  1 , Jens König  2 , Dennis Kadioglu  1 , Holger Storf  1
Affiliations

Development of an Interactive Dashboard for OSSE Rare Disease Registries

Jessica Vasseur et al. Stud Health Technol Inform. .

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.

Keywords: dashboard; data aggregation; data visualization; rare diseases; registries.

PubMed Disclaimer

LinkOut - more resources