# PVRI‐GoDeep—A Global Meta‐Registry at the Crossroads of Heart and Lung

**Authors:** Meike T. Fuenderich, Athiththan Yogeswaran, Patrick Janetzko, Khodr Tello, Werner Seeger, Raphael W. Majeed, Jochen Wilhelm, Mauro Acquaro, Mauro Acquaro, Imad Al Ghouleh, James Anderson, Jeffrey S. Annis, Anastasia Anthi, Alexandra Arvanitaki, Aparna Balasubramanian, Felix Ballmann, Harm Jan Bogaard, Evan Brittain, Hugh Buzacott, Hector R. Cajigas, John Cannon, Stephen Y. Chan, Victoria Damonte, Effrosyni Dima, Philipp Douschan, Nathan Dwyer, Diego Echazarreta, Christina A. Eichstaedt, Jean Elwing, Kai Förster, Robert Frantz, Marlize Frauendorf, Stefano Ghio, Hossein‐Ardeschir Ghofrani, George Giannakoulas, Friedrich Grimminger, Ekkehard Grünig, Lars Harbaum, Paul M. Hassoun, Melanie Heberling, Anne Hilgendorff, Luke Howard, Arun Jose, Ernesto Junaeda, David G. Kiely, Ingrid King, Hans Klose, Ziad Konswa, Gabor Kovacs, Philipp Krieb, Keiichiro Kuronuma, Edmund M. Lau, Melanie Lavender, Allan Lawrie, Mona Lichtblau, Kurt Marquardt, Hiromi Matsubara, Farhan Mubashir, Horst Olschewski, Mauricio Orozco‐Levi, Karen Osborn, Joanna Pepke‐Zaba, Alba Ramirez‐Sarmiento, Stephan Rosenkranz, Hani Sabbour, Sandeep Sahay, Khaled Saleh, Laura Scelsi, Yuriy Sirenko, Siva Sivakumaran, Andrew J. Sweatt, Thenappan Thenappan, Ioan Tilea, Olena Torbas, Silvia Ulrich, Andrea Varga, Helen M. Whitford, Christoph B. Wiedenroth, Martin R. Wilkins, Paul G. Williams, Shaun Yo, Roham T. Zamanian, Zhenguo Zhai, Zhu Zhang

PMC · DOI: 10.1002/cph4.70118 · Comprehensive Physiology · 2026-03-24

## TL;DR

PVRI GoDeep is a global registry combining data from multiple pulmonary hypertension centers to improve understanding and treatment of the disease.

## Contribution

PVRI GoDeep introduces a harmonized global meta-registry for pulmonary hypertension with over 45,000 patients.

## Key findings

- PVRI GoDeep integrates anonymized patient data from global PH registries into a harmonized dataset.
- The registry enables robust phenotyping and international comparisons across diverse PH subgroups.
- It supports research on rare subtypes, treatment responses, and newly recognized entities like mild PH.

## Abstract

Pulmonary hypertension (PH) is a complex disease characterized by increased pressure in the pulmonary arteries. It encompasses a heterogeneous group of entities that increase right heart afterload and often lead to right heart failure and premature death. Advancing diagnosis, risk stratification, and treatment across the diverse PH spectrum requires large, high‐quality, longitudinal datasets that exceed the scope of individual national or regional registries. To address this need, PVRI GoDeep was founded under the umbrella of the Pulmonary Vascular Research Institute (PVRI). This global meta registry harmonizes and integrates anonymized patient‐level data from existing PH registries at expert centers worldwide. PVRI GoDeep enables the reuse of locally collected real‐world data by mapping heterogeneous datasets to a predefined data dictionary, thorough quality checks, and regular updates. This approach supports phenotyping across all PH groups, enables international comparisons, and allows in‐depth analysis of rare subtypes, disease progression, treatment responses, and survival rates. Importantly, GoDeep makes clinically relevant research possible that cannot be conducted at the level of a single center, such as validating risk‐stratification tools across PH subgroups, evaluating off‐label therapies, and investigating newly recognized entities, such as mild PH. By January 2026, data from more than 45,000 individuals worldwide were integrated into GoDeep, making it one of the largest and most diverse PH registries. Offering a scalable, governed, and disease‐independent framework for harmonized real‐world evidence generation, PVRI GoDeep is a powerful platform to deepen the understanding of PH and support the development of clinical guidelines for the diagnosis and treatment of PH.

PVRI GoDeep is a global meta‐registry that harmonizes high‐quality patient‐level data from pulmonary hypertension registries worldwide. With over 45,000 enrolees already included, it enables robust phenotyping, international comparisons, and clinically relevant research across all PH subgroups beyond the scope of single‐center or national datasets.

## Linked entities

- **Diseases:** pulmonary hypertension (MONDO:0005149)

## Full-text entities

- **Genes:** PAH (phenylalanine hydroxylase) [NCBI Gene 5053] {aka PH, PKU, PKU1}, PVR (PVR cell adhesion molecule) [NCBI Gene 5817] {aka CD155, HVED, NECL5, Necl-5, PVS, TAGE4}, NPPB (natriuretic peptide B) [NCBI Gene 4879] {aka BNP, Iso-ANP}, SGCB (sarcoglycan beta) [NCBI Gene 6443] {aka A3b, LGMD2E, LGMDR4, SGC}
- **Diseases:** Interstitial Lung Disease (MESH:D017563), PVRI (MESH:D014947), mPAP (MESH:D000071079), Left heart disease (MESH:D006331), death (MESH:D003643), obesity (MESH:D009765), COPD (MESH:D029424), lung conditions (MESH:D008171), pulmonary arterial hypertension (MESH:D000081029), overweight (MESH:D050177), right heart failure (MESH:D006333), portopulmonary hypertension (MESH:D006973), PH (MESH:D006976), Respiratory Diseases (MESH:D012140), ID (MESH:C537985), underweight (MESH:D013851), cardiac remodeling (MESH:D020257), Respiratory Medicine (MESH:D012131), Pulmonary Vascular Disease (MESH:D014652), adaptation versus failure (MESH:D051437), pulmonary function impairment (OMIM:608852)
- **Chemicals:** carbon (MESH:D002244), oxygen (MESH:D010100), PGI2 (MESH:D011464)
- **Species:** Homo sapiens (human, species) [taxon 9606]

## Full text

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## Figures

6 figures with captions in the complete paper: https://tomesphere.com/paper/PMC13013090/full.md

## References

35 references — full list in the complete paper: https://tomesphere.com/paper/PMC13013090/full.md

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Source: https://tomesphere.com/paper/PMC13013090