Institute of Medical Informatics, Goethe University Frankfurt, University Hospital Frankfurt, Germany.
Department of General Pediatrics, University Children's Hospital Münster, Germany.
Stud Health Technol Inform. 2022 May 16;293:187-188. doi: 10.3233/SHTI220367.
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.
Based on user requirements from NEOCYST, we developed a general dashboard for all OSSE registries, which was extended with NEOCYST-specific statistics.
The dashboard now allows users to gain a quick overview of key data, such as patient counts or the availability of biospecimens.
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.
开源罕见病登记系统（OSSE）是一个基于网络的工具，用于创建罕见病患者登记处，目前系统中没有查看汇总登记数据的功能。在这里，我们介绍了为德国 NEOCYST（早期发病囊性肾病网络）联盟登记处开发和实施仪表板的情况。
根据 NEOCYST 的用户需求，我们为所有 OSSE 登记处开发了一个通用仪表板，并扩展了特定于 NEOCYST 的统计信息。
该仪表板现在允许用户快速了解关键数据，如患者人数或生物样本的可用性。
这项工作代表了 OSSE 仪表板的第一个原型方法，在现有的罕见病登记处中进行了演示，未来将进一步评估和改进。
