{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,3,25]],"date-time":"2026-03-25T12:52:16Z","timestamp":1774443136458,"version":"3.50.1"},"reference-count":0,"publisher":"IOS Press","isbn-type":[{"value":"9781643685335","type":"electronic"}],"license":[{"start":{"date-parts":[[2024,8,22]],"date-time":"2024-08-22T00:00:00Z","timestamp":1724284800000},"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":[[2024,8,22]]},"abstract":"<jats:p>The integration of data from various healthcare centers into disease registries is pivotal for facilitating collaborative research and enhancing clinical insights. In this study, we investigate the integration process of existing registries into the PVRI GoDeep meta-registry, focusing on the complexities and challenges encountered. We detail the integration process, including data transformation, mapping updates, and feedback mechanisms. Our findings underscore the importance of standardized processes and proactive communication in addressing data quality issues, ultimately enhancing the reliability and trustworthiness of meta-registry data. Through careful harmonization of the data and transparent documentation of data processing, we pave the way for leveraging registry data to drive advancements in pulmonary hypertension research and patient care.<\/jats:p>","DOI":"10.3233\/shti240412","type":"book-chapter","created":{"date-parts":[[2024,8,23]],"date-time":"2024-08-23T09:07:10Z","timestamp":1724404030000},"source":"Crossref","is-referenced-by-count":1,"title":["Data Integration for a Global Deep-Phenotyping Registry for Pulmonary Hypertension \u2013 Lessons Learned"],"prefix":"10.3233","author":[{"given":"Meike T.","family":"Fuenderich","sequence":"first","affiliation":[{"name":"Department of Internal Medicine, Universities of Giessen and Marburg Lung Center (UGMLC), Member of the German Center for Lung Research (DZL), Germany"},{"name":"Institute for Lung Health, Cardio-Pulmonary Institute, Giessen, Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Philipp","family":"Krieb","sequence":"additional","affiliation":[{"name":"Department of Internal Medicine, Universities of Giessen and Marburg Lung Center (UGMLC), Member of the German Center for Lung Research (DZL), Germany"},{"name":"Institute for Lung Health, Cardio-Pulmonary Institute, Giessen, Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Werner","family":"Seeger","sequence":"additional","affiliation":[{"name":"Department of Internal Medicine, Universities of Giessen and Marburg Lung Center (UGMLC), Member of the German Center for Lung Research (DZL), Germany"},{"name":"Institute for Lung Health, Cardio-Pulmonary Institute, Giessen, Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Raphael W.","family":"Majeed","sequence":"additional","affiliation":[{"name":"Department of Internal Medicine, Universities of Giessen and Marburg Lung Center (UGMLC), Member of the German Center for Lung Research (DZL), Germany"},{"name":"Institute for Lung Health, Cardio-Pulmonary Institute, Giessen, Germany"},{"name":"Institute of Medical Informatics, University Hospital RWTH Aachen, Aachen, Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"7437","container-title":["Studies in Health Technology and Informatics","Digital Health and Informatics Innovations for Sustainable Health Care Systems"],"original-title":[],"link":[{"URL":"https:\/\/ebooks.iospress.nl\/pdf\/doi\/10.3233\/SHTI240412","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2024,8,23]],"date-time":"2024-08-23T09:07:11Z","timestamp":1724404031000},"score":1,"resource":{"primary":{"URL":"https:\/\/ebooks.iospress.nl\/doi\/10.3233\/SHTI240412"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2024,8,22]]},"ISBN":["9781643685335"],"references-count":0,"URL":"https:\/\/doi.org\/10.3233\/shti240412","relation":{},"ISSN":["0926-9630","1879-8365"],"issn-type":[{"value":"0926-9630","type":"print"},{"value":"1879-8365","type":"electronic"}],"subject":[],"published":{"date-parts":[[2024,8,22]]}}}