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PVRI GoDeep - Global Deep Phenotyping PH Registry

Overview

GoDeep - PVRI Global Deep Phenotyping PH Registry

GoDeep is a deep phenotyping pulmonary hypertension (PH) meta-registry, integrating the data acquired in all PH disease groups from PH referral centers worldwide and spanning all continents. GoDeep is an initiative that was co-founded by the Pulmonary Vascular Institute (PVRI) and the Justus Liebig University Giessen in Giessen, Germany; and is overseen as a project of the Institute for Lung Health (ILH) in Giessen, Germany. Data are acquired from participating centers using a parameter framework that has been agreed upon by all centers, and anonymized data are transferred from the respective centers to a central coordination office at the ILH, in line with guidelines established by the relevant regulatory authorities. The GoDeep registry provides very rich datasets that allow for the evaluation of a multitude of epidemiological and scientific questions, which demands an appreciable number of enrollees, that suitably represent the broad geographical and ethnic spectrum of PH. A highly qualified team of statisticians and information technologists ensures the necessary quality control processes and statistical evaluation of the data sets.

Key Features as of date

Number of PH patients > 32,000
Comparator Subjects without PH > 3,000
Data Points > 8,000,000
Number of parameters/variables 350
PH diagnosis class WSPH 2013/2018 and/or WSPH 2024 ✓
WHO functional class PH ✓
Comorbidities ✓
Survival & cause of death ✓
Right heart catheterization (mandatory for registry entry) ✓
Spiroergometry ✓
Echocardiography ✓
6-minute walk test ✓
Lung function test ✓
PH specific drug therapy ✓
Imaging methods MRI / Chest CT ✓
Availability of bio samples ✓

a) Distribution of PH groups of the entire current GoDeep cohort

b) Distribution of mPAP of the entire current GoDeep cohort

Database
Participants
Publications
About us

Database

Phenotyping parameters

Our database contains up to 350 different parameters per patient consultation/visit. All parameters are annotated with international standard terminology codes (such as those provided by the Logical Observation Identifiers Names and Codes, LOINC, and the Systematized Nomenclature of Medicine-Clinical Terms, SNOMED-CT, databases). A detailed list of parameters is provided below.

Data protection

Data processing conforms to the current standard of General Data Protection Regulation of the European Union. Prior to transfer to the PVRI GoDeep registry, all data are anonymized using k-anonymization, which is overseen by local the data protection officers affiliated with each center.

Database and analysis tools

The storage of all observational data conforms to the OMOP common data model (CDM). For data analyses, complex algorithms and statistical calculations can be run either directly on the OMOP CDM or on data extracts that are supplied by the GoDeep team. Additionally, simple analysis tools are available via web browser to all members.

List of parameters: these include mandatory, essential, recommended and extended parameter sets:

Participants

The GoDeep Registry welcomes all PH referral centers worldwide. To participate, please e-mail us: contact@pvri-godeep-registry.org. The participating centers that currently contribute to the GoDeep registry are illustrated in the map and the tables below:

Contributing Members

 

About us

The PVRI GoDeep team

Kurt Marquardt, Werner Seeger, Patrick Fischer, Achim Michel-Backofen, Henning Gall, Tobiah Antoine, Raphael Majeed (not in the picture: Aileen Müller, Athiththen Yogeswaran, Khodr Tello, Meike Fünderich, Patrick Janetzko, Philipp Krieb)
Medical Team: Werner Seeger, Khodr Tello, Athiththan Yogeswaran, Patrick Janetzko
IT and Data Warehouse Configuration: Raphael Majeed, Kurt Marquardt, Achim Michel-Backofen
Data Documentation: Philipp Krieb, Aileen Müller, Farhan Mubashir
Statistics and Artificial Intelligence Analyses: Meike Fuenderich, Jochen Wilhelm

Giessen Contact Information

E-Mail: contact@pvri-godeep-registry.org
Internet address: https://ilh-giessen.de/en/pvri-godeep/
Telephone +49-641-985-42302

Legal notice

Information in accordance with section 5 TMG.

PVRI GoDeep Registry
Director Prof. Werner Seeger
Institute for Lung Health, Justus Liebig University Giessen
Gaffkystr.9
35392 Giessen
Germany

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