{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2024,5,6]],"date-time":"2024-05-06T15:56:30Z","timestamp":1715010990405},"reference-count":0,"publisher":"IOS Press","license":[{"start":{"date-parts":[[2022,5,16]],"date-time":"2022-05-16T00:00:00Z","timestamp":1652659200000},"content-version":"unspecified","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2022,5,16]]},"abstract":"<jats:p>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.<\/jats:p>","DOI":"10.3233\/shti220367","type":"book-chapter","created":{"date-parts":[[2022,5,20]],"date-time":"2022-05-20T07:27:22Z","timestamp":1653031642000},"source":"Crossref","is-referenced-by-count":1,"title":["Development of an Interactive Dashboard for OSSE Rare Disease Registries"],"prefix":"10.3233","author":[{"given":"Jessica","family":"Vasseur","sequence":"first","affiliation":[{"name":"Institute of Medical Informatics, Goethe University Frankfurt, University Hospital Frankfurt, Germany"}]},{"given":"Axel","family":"Zieschank","sequence":"additional","affiliation":[{"name":"Institute of Medical Informatics, Goethe University Frankfurt, University Hospital Frankfurt, Germany"}]},{"given":"Jens","family":"G\u00f6bel","sequence":"additional","affiliation":[{"name":"Institute of Medical Informatics, Goethe University Frankfurt, University Hospital Frankfurt, Germany"}]},{"given":"Jannik","family":"Schaaf","sequence":"additional","affiliation":[{"name":"Institute of Medical Informatics, Goethe University Frankfurt, University Hospital Frankfurt, Germany"}]},{"given":"Mareike","family":"Dahmer-Heath","sequence":"additional","affiliation":[{"name":"Institute of Medical Informatics, Goethe University Frankfurt, University Hospital Frankfurt, Germany"}]},{"given":"Jens","family":"K\u00f6nig","sequence":"additional","affiliation":[{"name":"Department of General Pediatrics, University Children\u2019s Hospital M\u00fcnster, Germany"}]},{"given":"Dennis","family":"Kadioglu","sequence":"additional","affiliation":[{"name":"Institute of Medical Informatics, Goethe University Frankfurt, University Hospital Frankfurt, Germany"}]},{"given":"Holger","family":"Storf","sequence":"additional","affiliation":[{"name":"Institute of Medical Informatics, Goethe University Frankfurt, University Hospital Frankfurt, Germany"}]}],"member":"7437","container-title":["Studies in Health Technology and Informatics","dHealth 2022"],"original-title":[],"link":[{"URL":"https:\/\/ebooks.iospress.nl\/pdf\/doi\/10.3233\/SHTI220367","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2022,5,20]],"date-time":"2022-05-20T07:27:22Z","timestamp":1653031642000},"score":1,"resource":{"primary":{"URL":"https:\/\/ebooks.iospress.nl\/doi\/10.3233\/SHTI220367"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2022,5,16]]},"references-count":0,"URL":"https:\/\/doi.org\/10.3233\/shti220367","relation":{},"ISSN":["0926-9630","1879-8365"],"issn-type":[{"value":"0926-9630","type":"print"},{"value":"1879-8365","type":"electronic"}],"subject":[],"published":{"date-parts":[[2022,5,16]]}}}