Pulmonary Circulation (Jul 2022)
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,
- Hector R. Cajigas,
- John Cannon,
- Stephen Y. Chan,
- Victoria Damonte,
- Jean Elwing,
- Kai Förster,
- Robert Frantz,
- Stefano Ghio,
- Imad Al Ghouleh,
- Anne Hilgendorff,
- Arun Jose,
- Ernesto Juaneda,
- David G. Kiely,
- Allan Lawrie,
- Stylianos E. Orfanos,
- Antonella Pepe,
- Joanna Pepke‐Zaba,
- Yuriy Sirenko,
- Andrew J. Swett,
- Olena Torbas,
- Roham T. Zamanian,
- Kurt Marquardt,
- Achim Michel‐Backofen,
- Tobiah Antoine,
- Jochen Wilhelm,
- Stephanie Barwick,
- Phillipp Krieb,
- Meike Fuenderich,
- Patrick Fischer,
- Henning Gall,
- Hossein‐Ardeschir Ghofrani,
- Friedrich Grimminger,
- Khodr Tello,
- Manuel J. Richter,
- Werner Seeger
Affiliations
- Raphael W. Majeed
- Department of Internal Medicine Universities of Giessen and Marburg Lung Center (UGMLC), German Center for Lung Research (DZL) Giessen Germany
- Martin R. Wilkins
- National Heart and Lung Institute and Imperial College London NHS Healthcare Trust London UK
- Luke Howard
- National Heart and Lung Institute and Imperial College London NHS Healthcare Trust London UK
- Paul M. Hassoun
- Department of Medicine Division of Pulmonary and Critical Care Medicine, Johns Hopkins University School of Medicine Baltimore Maryland USA
- Anastasia Anthi
- 1st Department of Critical Care National & Kapodistrian University of Athens Medical School and Pulmonary Hypertension Clinic, Evangelismos General Hospital Athens Greece
- Hector R. Cajigas
- Division of Pulmonary and Critical Care Medicine Mayo Clinic Rochester New York USA
- John Cannon
- Pulmonary Vascular Diseases Unit, Royal Papworth Hospital, Cambridge Biomedical Campus Cambridge UK
- Stephen Y. Chan
- Department of Medicine, Division of Cardiology, Center for Pulmonary Vascular Biology and Medicine, Pittsburgh Heart, Lung, Blood, and Vascular Medicine Institute University of Pittsburgh School of Medicine and University of Pittsburgh Medical Center Pittsburgh Pennsylvania USA
- Victoria Damonte
- Hospital de Niños, Hospital Privado Universitario, Clinica Universitaria Reina Fabiola and Instituto Oulton‐Catholic, University of Córdoba Córdoba Argentina
- Jean Elwing
- Division of Pulmonary, Critical Care and Sleep Medicine University of Cincinnati College of Medicine Cincinnati Ohio USA
- Kai Förster
- Ludwig‐Maximilians University of Munich Munchen Germany
- Robert Frantz
- Department of Cardiology Mayo Clinic Rochester New York USA
- Stefano Ghio
- Fondazione IRCCS Policlinico S.Matteo Pavia Italy
- Imad Al Ghouleh
- Department of Medicine, Division of Cardiology, Center for Pulmonary Vascular Biology and Medicine, Pittsburgh Heart, Lung, Blood, and Vascular Medicine Institute University of Pittsburgh School of Medicine and University of Pittsburgh Medical Center Pittsburgh Pennsylvania USA
- Anne Hilgendorff
- Ludwig‐Maximilians University of Munich Munchen Germany
- Arun Jose
- Division of Pulmonary, Critical Care and Sleep Medicine University of Cincinnati College of Medicine Cincinnati Ohio USA
- Ernesto Juaneda
- Hospital de Niños, Hospital Privado Universitario, Clinica Universitaria Reina Fabiola and Instituto Oulton‐Catholic, University of Córdoba Córdoba Argentina
- David G. Kiely
- Sheffield Pulmonary Vascular Disease Unit, Royal Hallamshire Hospital and University of Sheffield Sheffield UK
- Allan Lawrie
- Sheffield Pulmonary Vascular Disease Unit, Royal Hallamshire Hospital and University of Sheffield Sheffield UK
- Stylianos E. Orfanos
- 1st Department of Critical Care National & Kapodistrian University of Athens Medical School and Pulmonary Hypertension Clinic, Evangelismos General Hospital Athens Greece
- Antonella Pepe
- Fondazione IRCCS Policlinico S.Matteo Pavia Italy
- Joanna Pepke‐Zaba
- Pulmonary Vascular Diseases Unit, Royal Papworth Hospital, Cambridge Biomedical Campus Cambridge UK
- Yuriy Sirenko
- Department of Symptomatic Hypertension “National Scientific Center ‘The M.D. Strazhesko Institute of Cardiology’” of National Academy of Medical Science Kyiv Ukraine
- Andrew J. Swett
- Division of Pulmonary, Allergy, and Critical Care, and Vera Moulton Wall Center for Pulmonary Vascular Disease Stanford University Stanford California USA
- Olena Torbas
- Department of Symptomatic Hypertension “National Scientific Center ‘The M.D. Strazhesko Institute of Cardiology’” of National Academy of Medical Science Kyiv Ukraine
- Roham T. Zamanian
- Division of Pulmonary, Allergy, and Critical Care, and Vera Moulton Wall Center for Pulmonary Vascular Disease Stanford University Stanford California USA
- Kurt Marquardt
- Department of Internal Medicine Universities of Giessen and Marburg Lung Center (UGMLC), German Center for Lung Research (DZL) Giessen Germany
- Achim Michel‐Backofen
- Department of Internal Medicine Universities of Giessen and Marburg Lung Center (UGMLC), German Center for Lung Research (DZL) Giessen Germany
- Tobiah Antoine
- Department of Internal Medicine Universities of Giessen and Marburg Lung Center (UGMLC), German Center for Lung Research (DZL) Giessen Germany
- Jochen Wilhelm
- Institute for Lung Health (ILH), Cardio‐Pulmonary Institute (CPI) Giessen Germany
- Stephanie Barwick
- Pulmonary Vascular Research Institute (PVRI) Canterbury UK
- Phillipp Krieb
- Department of Internal Medicine Universities of Giessen and Marburg Lung Center (UGMLC), German Center for Lung Research (DZL) Giessen Germany
- Meike Fuenderich
- Department of Internal Medicine Universities of Giessen and Marburg Lung Center (UGMLC), German Center for Lung Research (DZL) Giessen Germany
- Patrick Fischer
- Department of Internal Medicine Universities of Giessen and Marburg Lung Center (UGMLC), German Center for Lung Research (DZL) Giessen Germany
- Henning Gall
- Department of Internal Medicine Universities of Giessen and Marburg Lung Center (UGMLC), German Center for Lung Research (DZL) Giessen Germany
- Hossein‐Ardeschir Ghofrani
- Department of Internal Medicine Universities of Giessen and Marburg Lung Center (UGMLC), German Center for Lung Research (DZL) Giessen Germany
- Friedrich Grimminger
- Department of Internal Medicine Universities of Giessen and Marburg Lung Center (UGMLC), German Center for Lung Research (DZL) Giessen Germany
- Khodr Tello
- Department of Internal Medicine Universities of Giessen and Marburg Lung Center (UGMLC), German Center for Lung Research (DZL) Giessen Germany
- Manuel J. Richter
- Department of Internal Medicine Universities of Giessen and Marburg Lung Center (UGMLC), German Center for Lung Research (DZL) Giessen Germany
- Werner Seeger
- Department of Internal Medicine Universities of Giessen and Marburg Lung Center (UGMLC), German Center for Lung Research (DZL) Giessen Germany
- DOI
- https://doi.org/10.1002/pul2.12123
- Journal volume & issue
-
Vol. 12,
no. 3
pp. n/a – n/a
Abstract
Abstract The Pulmonary Vascular Research Institute GoDeep meta‐registry is a collaboration of pulmonary hypertension (PH) reference centers across the globe. Merging worldwide PH data in a central meta‐registry to allow advanced analysis of the heterogeneity of PH and its groups/subgroups on a worldwide geographical, ethnical, and etiological landscape (ClinTrial. gov NCT05329714). Retrospective and prospective PH patient data (diagnosis based on catheterization; individuals with exclusion of PH are included as a comparator group) are mapped to a common clinical parameter set of more than 350 items, anonymized and electronically exported to a central server. Use and access is decided by the GoDeep steering board, where each center has one vote. As of April 2022, GoDeep comprised 15,742 individuals with 1.9 million data points from eight PH centers. Geographic distribution comprises 3990 enrollees (25%) from America and 11,752 (75%) from Europe. Eighty‐nine perecent were diagnosed with PH and 11% were classified as not PH and provided a comparator group. The retrospective observation period is an average of 3.5 years (standard error of the mean 0.04), with 1159 PH patients followed for over 10 years. Pulmonary arterial hypertension represents the largest PH group (42.6%), followed by Group 2 (21.7%), Group 3 (17.3%), Group 4 (15.2%), and Group 5 (3.3%). The age distribution spans several decades, with patients 60 years or older comprising 60%. The majority of patients met an intermediate risk profile upon diagnosis. Data entry from a further six centers is ongoing, and negotiations with >10 centers worldwide have commenced. Using electronic interface‐based automated retrospective and prospective data transfer, GoDeep aims to provide in‐depth epidemiological and etiological understanding of PH and its various groups/subgroups on a global scale, offering insights for improved management.
Keywords
