PVRI GoDeep Global Deep Phenotyping Meta-Registry for Pulmonary Hypertension

Pulmonary Hypertension Clinical Trial

— PVRI GoDeep  

Official title:

PVRI Global Deep Phenotyping Meta-Registry for Pulmonary Hypertension

Clinical Trial Details — Status: Recruiting

Administrative data

• NCT number: NCT05329714
• Other study ID #: PVRIGoDeep
• Status: Recruiting
• Start date: January 30, 2020
• Est. completion date: January 30, 2055

Study information

• Verified date: May 2023
• Source: University of Giessen
• Contact: Raphael W Majeed
• Phone: +49 641 985 42502
• Email: raphael.majeed[@]innere.med.uni-giessen.de
• Is FDA regulated: No
• Study type: Observational

Clinical Trial 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.

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.

Recruitment information / eligibility

• Status: Recruiting
• Enrollment: 40000
• Est. completion date: January 30, 2055
• Est. primary completion date: January 30, 2050
• Accepts healthy volunteers: Accepts Healthy Volunteers
• Gender: All
• Age group: N/A and older

Eligibility

Inclusion Criteria:

• Clinical Diagnosis of Pulmonary Hypertension

Exclusion Criteria:

• none

Related Conditions & MeSH terms

• Global Health
• Hypertension
• Hypertension, Pulmonary
• Pulmonary Hypertension

Locations

Country	Name	City	State
Germany	University Giessen PH Center	Gießen	Hessen

Sponsors (17)

Lead Sponsor

Collaborator

University of Giessen

Academy of Medical Sciences of Ukraine, Aristotle University Of Thessaloniki, Hospital de Niños de la Santísima Trinidad, Imperial College London, Johns Hopkins University, Mayo Clinic, Milpark Hospital, National and Kapodistrian University of Athens, Stanford University, The Methodist Hospital Research Institute, University Hospital Heidelberg, University Hospital of Targu Mures, Romania, University of Pavia, University of Pittsburgh, University of Sheffield, Vanderbilt University Medical Center

Country where clinical trial is conducted

Germany, 

Outcome

Type	Measure	Description	Time frame	Safety issue
Primary	Global analysis of PH patients	Global comparison and analysis of the course of disease of PH patients	From entry into the registry up to 10 years