PVRI GoDeep Global Deep Phenotyping Meta-Registry for Pulmonary Hypertension (PVRI GoDeep)

May 9, 2023 updated by: University of Giessen

PVRI Global Deep Phenotyping Meta-Registry for Pulmonary Hypertension

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.

Study Overview

Status

Recruiting

Conditions

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 Type

Observational

Enrollment (Anticipated)

40000

Contacts and Locations

This section provides the contact details for those conducting the study, and information on where this study is being conducted.

Study Contact

Study Locations

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Eligibility Criteria

Ages Eligible for Study

  • Child
  • Adult
  • Older Adult

Accepts Healthy Volunteers

Yes

Sampling Method

Non-Probability Sample

Study Population

Global cohort of patients with pulmonary hypertension (PH)

Description

Inclusion Criteria:

  • Clinical Diagnosis of Pulmonary Hypertension

Exclusion Criteria:

  • none

Study Plan

This section provides details of the study plan, including how the study is designed and what the study is measuring.

How is the study designed?

Design Details

Cohorts and Interventions

Group / Cohort
Patients with Pulmonary Hypertension
Patients with a diagnosis of pulmonary hypertension typically diagnosed via right heart catheterization.
Control Group
Participating PH centers can optionally provide data about patients with exclusion of pulmonary hypertension

What is the study measuring?

Primary Outcome Measures

Outcome Measure
Measure Description
Time Frame
Global analysis of PH patients
Time Frame: From entry into the registry up to 10 years
Global comparison and analysis of the course of disease of PH patients
From entry into the registry up to 10 years

Collaborators and Investigators

This is where you will find people and organizations involved with this study.

Sponsor

University of Giessen

Collaborators

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

Study record dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Major Dates

Study Start (Actual)

January 30, 2020

Primary Completion (Anticipated)

January 30, 2050

Study Completion (Anticipated)

January 30, 2055

Study Registration Dates

First Submitted

March 14, 2022

First Submitted That Met QC Criteria

April 7, 2022

First Posted (Actual)

April 15, 2022

Study Record Updates

Last Update Posted (Actual)

May 11, 2023

Last Update Submitted That Met QC Criteria

May 9, 2023

Last Verified

May 1, 2023

More Information

Terms related to this study

Keywords

Additional Relevant MeSH Terms

Other Study ID Numbers

  • PVRIGoDeep

Drug and device information, study documents

Studies a U.S. FDA-regulated drug product

No

Studies a U.S. FDA-regulated device product

No

This information was retrieved directly from the website clinicaltrials.gov without any changes. If you have any requests to change, remove or update your study details, please contact register@clinicaltrials.gov. As soon as a change is implemented on clinicaltrials.gov, this will be updated automatically on our website as well.

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