PVRI GoDeep Global Deep Phenotyping Meta-Registry for Pulmonary Hypertension

Recruiting

• Conditions: Pulmonary Hypertension; Global Health

• Registration Number: NCT05329714
• Lead Sponsor: University of Giessen

Brief Summary

PVRI-GoDeep is a PH Meta-Registry, run under the umbrella of the Pulmonary Vascular Research Institute (PVRI). It merges anonymized PH patient related data from various local registries around the world run under the responsibility of PVRI members. It will be operated under the auspices of the University of Giessen/Giessen PH center. Combining deep phenotyping with worldwide outreach, PVRI-GoDeep aims to offer insights into specific geographical and ethnical profiles of PH, to deepen the epidemiological, clinical and molecular understanding of this disease and to promote strategies for improved individualized treatment of PH patients.

Detailed Description

PVRI-GoDeep is a PH Meta-Registry, run under the umbrella of the Pulmonary Vascular Research Institute (PVRI). It merges anonymized PH patient related data from various local registries around the world run under the responsibility of PVRI members. It will be operated under the auspices of the University of Giessen/Giessen PH center.

Combining deep phenotyping with worldwide outreach, PVRI-GoDeep aims to offer insights into specific geographical and ethnical profiles of PH, to deepen the epidemiological, clinical and molecular understanding of this disease and to promote strategies for improved individualized treatment of PH patients.

The data provided by PVRI-GoDeep will support academia to perform scientific projects in the field of PH. Pharmaceutical / commercial companies will be charged fee for access to PVRI-GoDeep data and / or analysis, thereby creating revenues exclusively devoted to support the PVRI mission and the registries entering their data into PVRI-GoDeep. All requests from academia or commercial companies are to be decided by the PVRI-GoDeep consortium, serving as Use and Access Committee.

Study Timeline

• Study Start: 2020-01-30
• Study First Submitted: 2022-03-14
• Study First Submitted QC: 2022-04-07
• Study First Posted: 2022-04-15
• Status Verified: 2025-04
• Last Update Submitted: 2025-04-01
• Last Update Posted: 2025-04-04
• Primary Completion: 2050-01-30
• Study Completion: 2055-01-30

Recruitment & Eligibility

• Status: RECRUITING
• Sex: All
• Target Recruitment: 40000

Inclusion Criteria

• Clinical Diagnosis of Pulmonary Hypertension

Exclusion Criteria

• none

Study & Design

• Study Type: OBSERVATIONAL
• Study Design: Not specified

Primary Outcome Measures

Name	Time	Method
Global analysis of PH patients	From entry into the registry up to 10 years	Global comparison and analysis of the course of disease of PH patients

Trial Locations

Locations (1)

University Giessen PH Center; 🇩🇪 Gießen, Hessen, Germany