PVRI GoDeep Global Deep Phenotyping Meta-Registry for Pulmonary Hypertension

Conditions

Global Health, Pulmonary Hypertension

Keywords

Pulmonary Hypertension, Data Integration, Standardization, Global Health, Quality Indicators

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.

Yogeswaran A, Gall H, Fünderich M, Wilkins MR, Howard L, Kiely DG, Lawrie A, Hassoun PM, Sirenklo Y, Torbas O, Sweatt AJ, Zamanian RT, Williams PG, Frauendorf M, Arvanitaki A, Giannakoulas G, Saleh K, Sabbour H, Cajigas HR, Frantz R, Al Ghouleh I, Chan SY, Brittain E, Annis JS, Pepe A, Ghio S, Orfanos S, Anthi A, Majeed RW, Wilhelm J, Ghofrani HA, Richter MJ, Grimminger F, Sahay S, Tello K, Seeger W, Pulmonary Vascular Research Institute GoDeep Consortium.

2024-03-1921 citations

10.1016/j.chest.2024.03.018

Pulmonary Vascular Research Institute GoDeep: A meta‐registry merging deep phenotyping datafrom international PH reference centers

Raphael W. Majeed, Martin R. Wilkins, Luke Howard, Paul M. Hassoun, Anastasia Anthi et al. (40 authors)

Pulmonary Circulation2022-07-0117 citations

10.1002/pul2.12123

Interventions

None listed

Study design

Observational model

COHORT

Time perspective

OTHER

Eligibility

Sex/Gender

ALL

Healthy volunteers

Yes

Inclusion criteria

* Clinical Diagnosis of Pulmonary Hypertension

Exclusion criteria

* none

Design outcomes

Primary

Measure	Time frame	Description
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

Countries

Germany

Contacts

Primary ContactRaphael W Majeed

raphael.majeed@innere.med.uni-giessen.de+49 641 985 42502

Outcome results