Data Integration for a Global Deep-Phenotyping Registry for Pulmonary Hypertension – Lessons Learned

Studies in health technology and informatics, vol. 316, pp. 334–338

Abstract

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.

Authors 4

1. Meike Fünderich corresponding

   German Center for Lung Research · Universities of Giessen and Marburg Lung Center · Cardio-Pulmonary Institute

   Affiliation as printed

   Department of Internal Medicine, Universities of Giessen and Marburg Lung Center (UGMLC), Member of the German Center for Lung Research (DZL), Germany

   Institute for Lung Health, Cardio-Pulmonary Institute, Giessen, Germany

2. Philipp Krieb

   German Center for Lung Research · Universities of Giessen and Marburg Lung Center · Cardio-Pulmonary Institute

   Affiliation as printed

   Department of Internal Medicine, Universities of Giessen and Marburg Lung Center (UGMLC), Member of the German Center for Lung Research (DZL), Germany

   Institute for Lung Health, Cardio-Pulmonary Institute, Giessen, Germany

3. Werner Seeger

   German Center for Lung Research · Universities of Giessen and Marburg Lung Center · Cardio-Pulmonary Institute

   Affiliation as printed

   Department of Internal Medicine, Universities of Giessen and Marburg Lung Center (UGMLC), Member of the German Center for Lung Research (DZL), Germany

   Institute for Lung Health, Cardio-Pulmonary Institute, Giessen, Germany

4. Raphael W. Majeed Aachen Institute of Medical Informatics

   Universitätsklinikum Aachen · German Center for Lung Research · Universities of Giessen and Marburg Lung Center · Cardio-Pulmonary Institute · RWTH Aachen University

   Affiliation as printed

   Department of Internal Medicine, Universities of Giessen and Marburg Lung Center (UGMLC), Member of the German Center for Lung Research (DZL), Germany

   Institute for Lung Health, Cardio-Pulmonary Institute, Giessen, Germany

   Institute of Medical Informatics, University Hospital RWTH Aachen, Aachen, Germany