Towards FAIR Clinical Registries: A Privacy-by-Design Framework for Migrating Legacy Document-Based Clinical Reports to REDCap

Studies in health technology and informatics, vol. 336, pp. 1521–1525

Abstract

Clinical registries are vital for research, yet many documents and reports still only exist as legacy Word documents or PDFs, making data reuse and interoperability difficult. Manual data entry into modern systems is slow and error-prone, and migration is further complicated by privacy regulations and restricted hospital networks. We developed a privacy-by-design pipeline that automatically converts document-based right-heart-catheterization (RHC) reports into structured, research-ready data in REDCap. The workflow uses deterministic parsing and domain-specific mapping, enforces longitudinal consistency across repeated examinations, and includes a mandatory anonymisation checkpoint before any data leaves the clinical domain. Deployed for a growing pulmonary hypertension registry (>5000 patients), the system produces auditable, reproducible outputs and substantially reduces manual effort while maintaining GDPR compliance. This approach offers a practical path to modernizing document-based registries and advancing FAIR-aligned, scalable research infrastructures.

Authors 6

1. Jeeva Sam

   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) Giessen, Germany

   Institute for Lung Health (ILH), Cardio-Pulmonary Institute (CPI), Giessen, Germany

2. Romina Blasini

   Justus-Liebig-Universität Gießen

   Affiliation as printed

   Institute of Medical Informatics, Justus-Liebig-University, Giessen, Germany

3. Patrick Janetzko

   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) Giessen, Germany

   Institute for Lung Health (ILH), Cardio-Pulmonary Institute (CPI), Giessen, Germany

4. Khodr Tello

   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) Giessen, Germany

   Institute for Lung Health (ILH), Cardio-Pulmonary Institute (CPI), Giessen, Germany

5. 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) Giessen, Germany

   Institute for Lung Health (ILH), Cardio-Pulmonary Institute (CPI), Giessen, Germany

6. Raphael W. Majeed Aachen Institute of Medical Informatics

   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) Giessen, Germany

   Institute for Lung Health (ILH), Cardio-Pulmonary Institute (CPI), Giessen, Germany

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