Stud Health Technol Inform. 2022 May 16;293:187-188. doi: 10.3233/SHTI220367.
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.
PMID:35592980 | DOI:10.3233/SHTI220367
