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. 2022 Jul 1;12(3):e12123.
doi: 10.1002/pul2.12123. eCollection 2022 Jul.

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

Raphael W Majeed  1   2 , Martin R Wilkins  3 , Luke Howard  3 , Paul M Hassoun  4 , Anastasia Anthi  5 , Hector R Cajigas  6 , John Cannon  7 , Stephen Y Chan  8 , Victoria Damonte  9 , Jean Elwing  10 , Kai Förster  11 , Robert Frantz  12 , Stefano Ghio  13 , Imad Al Ghouleh  8 , Anne Hilgendorff  11 , Arun Jose  10 , Ernesto Juaneda  9 , David G Kiely  14 , Allan Lawrie  14 , Stylianos E Orfanos  5 , Antonella Pepe  13 , Joanna Pepke-Zaba  7 , Yuriy Sirenko  15 , Andrew J Swett  16 , Olena Torbas  15 , Roham T Zamanian  16 , Kurt Marquardt  1 , Achim Michel-Backofen  1 , Tobiah Antoine  1 , Jochen Wilhelm  17 , Stephanie Barwick  18 , Phillipp Krieb  1 , Meike Fuenderich  1 , Patrick Fischer  1 , Henning Gall  1 , Hossein-Ardeschir Ghofrani  1   17 , Friedrich Grimminger  1   17 , Khodr Tello  1   17 , Manuel J Richter  1   17 , Werner Seeger  1   17
Affiliations

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

Raphael W Majeed et al. Pulm Circ. .

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: deep phenotyping; meta‐registry; outcome; pulmonary hypertension; risk assessment; worldwide outreach.

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Conflict of interest statement

AL has received support and fees from Janssen, Bayer, Novartis, GSK, Alexion, and IQVIA Ltd. DK has received personal fees for consultancy work giving education talks and participation in steering committees from Acceleron, Ferrer, GSK, and Janssen. His department has received grants for research from GSK and Janssen. EJ is GSL Investigator. HAG has received fees from Actelion, AstraZeneca, Bayer, GSK, Janssen‐Cilag, Lilly, Novartis, OMT, Pfizer, and United Therapeutics. HG has received fees from Actelion, AstraZeneca, Bayer, GSK, Janssen‐Cilag, Lilly, Novartis, OMT, Pfizer, and United Therapeutics. IAG has held research grants from the United Therapeutics and Gilead Sciences Research Scholars Programs. JC has served as a consultant for Acceleron Pharma, Actelion, GSK, and Merck and has received speaker fees from Actelion and GSK. JME has served as a consultant for United Therapeutics, Altavant, Aerovate, Bayer, Gossamer Bio, and Liquida. She has participated in clinical research funded by Janssen, United Therapeutics, Liquidia, Phase Bio, Gossamer Bio, Bayer, Acceleron, Altavant, and Aerovate. KT has received speaker fees from Janssen. MJR has received support from Janssen Pharmaceutica and Bayer Pharma AG, as well as speaker fees from Janssen Pharmaceutica and OMT. Stephen Y. Chan has served as a consultant for Acceleron Pharma and United Therapeutics; SYC (Stephen Y. Chan) has held research grants from Actelion, Bayer, and Pfizer. SYC has filed patent applications regarding metabolic targeting in pulmonary hypertension. SYC is a director, officer, and shareholder of Synhale Therapeutics. WS has received consultancy fees from Abivax, Lung Biotechnology, Liquidia, Medspray, Pieris, United Therapeutics, and Vectura. The remaining authors declare no conflict of interest.

Figures

Figure 1
Figure 1
Data flow from local PH registry to PVRI GoDeep. PH, pulmonary hypertension; PVRI, Pulmonary Vascular Research Institute.
Figure 2
Figure 2
Distribution and global patterns of PH patients currently entered into the GoDeep meta‐registry. NYHA, New York Heart Association functional class; PH, pulmonary hypertension; PH Gr, groups of PH diagnosis.
Figure 3
Figure 3
Retrospective observation periods of PH patients collected in GoDeep as of April 2022. PH, pulmonary hypertension.
See this image and copyright information in PMC

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