{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2024,8,26]],"date-time":"2024-08-26T21:00:12Z","timestamp":1724706012387},"reference-count":0,"publisher":"IOS Press","license":[{"start":{"date-parts":[[2021,5,24]],"date-time":"2021-05-24T00:00:00Z","timestamp":1621814400000},"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":[[2021,5,24]]},"abstract":"<jats:p>Rare lung diseases affect 1.5\u20133 million people in Europe while causing bad prognosis or early deaths for patients. The European Reference Network for Respiratory Diseases (ERN-Lung) is a patient centric network, funded by the European Union (EU). The aims of ERN-LUNG is to increase healthcare and research regarding rare respiratory diseases. An initial need for cross-border healthcare and research is the use of registries and databases. A typical problem in registries for RDs is the data exchange, since the registries use different kind of data with different types or descriptions. Therefore, ERN-Lung decided to create a new Registry Data-Warehouse (RDW) where different existing registries are connected to enable cross-border healthcare within ERN-Lung. This work facilitates the aims, conception and implementation for the RDW, while considering a semantic interoperability approach. We created a common dataset (CDS) to have a common descriptions of respiratory diseases patients within the ERN registries. We further developed the RDW based on Open Source Registry System for Rare Diseases (OSSE), which includes a Metadata Repository with the Samply.MDR to unique describe data for the minimal dataset. Within the RDW, data from existing registries is not stored in a central database. The RDW uses the approach of the \u201cDecentral Search\u201d and can send requests to the connected registries, whereas only aggregated data is returned about how many patients with specific characteristics are available. However, further work is needed to connect the different existing registries to the RDW and to perform first studies.<\/jats:p>","DOI":"10.3233\/shti210049","type":"book-chapter","created":{"date-parts":[[2021,5,27]],"date-time":"2021-05-27T11:57:58Z","timestamp":1622116678000},"source":"Crossref","is-referenced-by-count":3,"title":["The Registry Data Warehouse in the European Reference Network for Rare Respiratory Diseases \u2013 Background, Conception and Implementation"],"prefix":"10.3233","author":[{"given":"Jannik","family":"Schaaf","sequence":"first","affiliation":[{"name":"Medical Informatics Group, University Hospital Frankfurt, Frankfurt, Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"James","family":"Chalmers","sequence":"additional","affiliation":[{"name":"Scottish Centre for Respiratory Research, University of Dundee, Dundee, United Kingdom"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Heymut","family":"Omran","sequence":"additional","affiliation":[{"name":"Department of General Pediatrics, University of M\u00fcnster, M\u00fcnster, Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Petra","family":"Pennekamp","sequence":"additional","affiliation":[{"name":"Department of General Pediatrics, University of M\u00fcnster, M\u00fcnster, Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Olivier","family":"Sitbon","sequence":"additional","affiliation":[{"name":"Centre de R\u00e9f\u00e9rence de l\u2019Hypertension Pulmonaire, H\u00f4pital Bic\u00eatre, AP-HP, Universit\u00e9 Paris-Saclay, France"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Thomas O.F.","family":"Wagner","sequence":"additional","affiliation":[{"name":"Frankfurt Reference Center for Rare Diseases, University Hospital Frankfurt, Frankfurt, Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Abilio","family":"Reis","sequence":"additional","affiliation":[{"name":"Unidade de Doen\u00e7a Vascular Pulmonar, Centro Hospitalar Universit\u00e1rio do Porto, Porto, Portugal"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Dennis","family":"Kadioglu","sequence":"additional","affiliation":[{"name":"Medical Informatics Group, University Hospital Frankfurt, Frankfurt, Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Holger","family":"Storf","sequence":"additional","affiliation":[{"name":"Medical Informatics Group, University Hospital Frankfurt, Frankfurt, Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"7437","container-title":["Studies in Health Technology and Informatics","German Medical Data Sciences: Bringing Data to Life"],"original-title":[],"link":[{"URL":"https:\/\/ebooks.iospress.nl\/pdf\/doi\/10.3233\/SHTI210049","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2021,10,25]],"date-time":"2021-10-25T13:09:27Z","timestamp":1635167367000},"score":1,"resource":{"primary":{"URL":"https:\/\/ebooks.iospress.nl\/doi\/10.3233\/SHTI210049"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2021,5,24]]},"references-count":0,"URL":"https:\/\/doi.org\/10.3233\/shti210049","relation":{},"ISSN":["0926-9630","1879-8365"],"issn-type":[{"value":"0926-9630","type":"print"},{"value":"1879-8365","type":"electronic"}],"subject":[],"published":{"date-parts":[[2021,5,24]]}}}