¹Department of Internal Medicine, Universities of Giessen and Marburg Lung Center (UGMLC), Member of the German Center for Lung Research (DZL), Gießen, Germany
²Institute for Lung Health (ILH), Cardio-Pulmonary Institute (CPI), Gießen, Germany
³Institute of Medical Informatics, RWTH Aachen University, Aachen, Germany

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Introduction: Pulmonary hypertension (PH) encompasses a diverse and complex group of diseases marked by elevated pulmonary arterial pressure, with varying causes and clinical manifestations. While large-scale registries like PHAR in North America and COMPERA in Europe have advanced regional PH research, their scope remains restricted to specific countries, continents, or disease subgroups [1], [2]. The PVRI GoDeep meta-registry is a global initiative unifying retrospective and prospective patient-level data from expert centers worldwide [3], [4]. By addressing the fragmentation and heterogeneity of existing PH cohorts, GoDeep facilitates standardized, longitudinal analyses across regions, while ensuring compliance with local and international data protection regulations. This lays the groundwork for more cohesive, collaborative, and impactful PH research globally.

Methods: The GoDeep meta-registry integrates anonymized data from independent PH registries on a global scale using a standardized parameter list of over 350 variables. This list was developed through iterative, multi-institutional expert consensus involving founding centers in the UK, Germany, and the USA. To ensure semantic interoperability, each data element is mapped to international standard terminologies such as SNOMED-CT and LOINC, with custom codes created when necessary. Structural interoperability is achieved using HL7 FHIR (R4) resources, with each center's dataset transformed into modular FHIR Bundle collections. All data submissions are full dataset updates, replacing previous versions to maintain consistency and support longitudinal analyses.

After integrating a new center or dataset update, variable units are identified and converted to the registry’s standard to ensure comparability across datasets. A detailed feedback report is compiled, summarizing the variables, their units, and any issues such as missing or implausible values and dates. This comprehensive feedback is shared with the respective center, enabling transparent communication and collaborative quality assurance. Data is then converted into an analysis-ready format, allowing filtering by diagnosis groups and defining event anchors.

Results: As of April 2025, 28 PH registries from six continents have contributed over 35,000 anonymized patient records to GoDeep, with eight more centers in the onboarding process and multiple publications already released [3], [4], [5]. Standardized pipelines have enabled successful transformation of all data into a FHIR-compliant structure, ensuring global semantic and structural interoperability. Each center performs local anonymization using k-anonymity and relative date shifting anchored to diagnosis. Automated R-based validation scripts generate feedback reports, flagging implausible values based on expert-defined rules. To ensure scalability, GoDeep offers open-access interoperability tools, REDCap templates, and metadata repositories to streamline data entry and site onboarding.

Conclusion: The GoDeep meta-registry represents a significant advancement in global PH research by unifying diverse datasets into a harmonized, analysis-ready format. Its standardized structure and rigorous data validation processes enable robust longitudinal studies and cross-regional comparisons that were previously challenging due to data heterogeneity. By offering open tools and promoting collaborative data sharing, GoDeep sets a model for scalable, interoperable registries in rare and complex diseases. Ongoing expansion and integration of new centers will further enhance data richness and global representation, ultimately supporting deeper insights into disease mechanisms, treatment patterns, and patient outcomes across the PH spectrum.

The authors declare that they have no competing interests.

The authors declare that a positive ethics committee vote has been obtained.

Literatur

[1] Grinnan D, et al. Prediction of patient outcomes through social determinants of health: the Pulmonary Hypertension Association Registry (PHAR) evaluation. Pulmonary Circulation. 2022;12(3):e12120.
[2] Hoeper MM, et al. Phenotyping of idiopathic pulmonary arterial hypertension: a registry analysis. Lancet Respir Med. 2022;10(10):937-48.
[3] Majeed R, et al. Pulmonary Vascular Research Institute GoDeep: A meta-registry merging deep phenotyping data from international PH reference centers. Pulmonary Circulation. 2022;12(3):e12123. DOI: 10.1002/pul2.12123
[4] Fuenderich MT, et al. Data Integration for a Global Deep-Hypertension – Lessons Learned. 2024.
[5] Yogeswaran A, et al. Comparison of contemporary risk scores in all groups of pulmonary hypertension: a Pulmonary Vascular Research Institute GoDeep meta-registry analysis. Chest. 2024;166(3):585-603.