PVRI GoDeep Global Deep Phenotyping Meta-Registry for Pulmonary Hypertension

University of Giessen

Status: Enrolling

Conditions: Global Health; Pulmonary Hypertension

Study type: Observational

Funder types: Other

Identifiers

NCT05329714

PVRIGoDeep

Details and patient eligibility

About

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.

Full 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.

Enrollment: 40,000 estimated patients

Sex: All

Volunteers: Accepts Healthy Volunteers

Inclusion criteria

• Clinical Diagnosis of Pulmonary Hypertension

Exclusion criteria

• none

Trial design

40,000 participants in 2 patient groups

Patients with Pulmonary Hypertension

Description:

Patients with a diagnosis of pulmonary hypertension typically diagnosed via right heart catheterization.

Control Group

Description:

Participating PH centers can optionally provide data about patients with exclusion of pulmonary hypertension