Clinical trial NCT05329714: PVRI GoDeep Global Deep Phenotyping Meta-Registry for Pulmonary Hypertension
Official title: PVRI Global Deep Phenotyping Meta-Registry for Pulmonary Hypertension
Study type: OBSERVATIONAL
Overall status: RECRUITING
Conditions: Pulmonary Hypertension
Global Health
Keywords: Pulmonary Hypertension
Data Integration
Standardization
Global Health
Quality Indicators
Lead sponsor: University of Giessen
Sponsor class: OTHER
Collaborators: name: Imperial College London
name: Johns Hopkins University
name: Stanford University
name: University of Sheffield
name: University of Pittsburgh
name: University of Pavia
name: Hospital de Niños de la Santísima Trinidad
name: Academy of Medical Sciences of Ukraine
name: The Methodist Hospital Research Institute
name: Vanderbilt University Medical Center
name: Mayo Clinic
name: National and Kapodistrian University of Athens
name: Aristotle University Of Thessaloniki
name: University Hospital of Targu Mures, Romania
name: University Hospital Heidelberg
name: Milpark Hospital
name: University of Minnesota
name: Royal Prince Alfred Hospital, Sydney, Australia
name: Fiona Stanley Hospital
name: Sunshine Coast University Hospital
name: China-Japan Friendship Hospital
name: Medical University of Graz
name: National Hospital Organization Okayama Medical Center
name: Royal Hobart Hospital
name: University Hospital, Zürich
name: Universidad Nacional de La Plata
name: Gold Coast Hospital and Health Service
First posted: 2022-04-15
Enrollment: 40000
Sex: ALL
Standard ages: CHILD
ADULT
OLDER_ADULT
Accepts healthy volunteers: yes
Observational model: COHORT
Time perspective: OTHER
Sampling method: NON_PROBABILITY_SAMPLE
Study population: Global cohort of patients with pulmonary hypertension (PH)

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.

Eligibility criteria: Inclusion Criteria:

* Clinical Diagnosis of Pulmonary Hypertension

Exclusion Criteria:

* none

Primary outcomes:
measure: Global analysis of PH patients
timeFrame: From entry into the registry up to 10 years
Secondary outcomes:
Other outcomes:
Locations:
city: Gießen
country: Germany
facility: University Giessen PH Center
state: Hessen
Study officials:
References: