GoDeep Global PH Registry

GoDeep is a global Pulmonary Hypertension (PH) meta-registry run under the umbrella of the PVRI by a team of researchers, physicians, and computer scientists at the Justus Liebig University Giessen in Germany. 

Its goal is to expand our understanding of PH by analysing epidemiological differences, uncovering insights into disease mechanisms, and helping to improve treatment for patients worldwide.

What GoDeep does

GoDeep merges anonymised PH patient data from local registries around the world. Any PH centre with an existing database of over 100 patients diagnosed by right heart catheterisation can join, and participation is free of charge. Only anonymised data is shared, and each contributing centre retains full ownership of its data.

The GoDeep dataset consists of c.350 parameters collected at baseline and follow-up, covering:

• Diagnosis and classification
• Co-morbidities
• Medication
• Right heart catheterisation
• Lung function tests
• Laboratory results
   

How data is structured

GoDeep stores data in four defined levels:

• Mandatory: no inclusion without this data
• Essential: follow-up data should contain this; used for quality control o Recommended: should be collected if possible
• Extended: additional deep phenotyping data 

GoDeep provides IT support for mapping data sets and establishing an electronic link for data transfer, as well as tools for data anonymisation. The central data repository is updated automatically on a quarterly basis. 
 

Access to GoDeep data

There are two levels of access to the data in the registry: 

• First level - data exploration and feasibility analysis
• Second level - unrestricted access for specific research questions 

For GoDeep consortium members
GoDeep consortium members that provide data for the meta registry gain permanent first and second-level access free of charge. 

For PVRI academic members not contributing data
Academia-based PVRI members not contributing to the meta registry get first-level access free of charge. Fees are charged for second-level access after an application and review process. This involves the export of analysis results only; there is no export of raw data. 

For industry or external academic organisations
Access for industry or external academic organisations is via a written request and review process. The access fee is by negotiation, at a level above that for academic fees. Again, there is no export of raw data, and each individual GoDeep centre is free to decide on participation. 
 

Learn more or get involved

You can find more information on https://ilh-giessen.de/en/pvri-godeep/.
To enquire about accessing GoDeep data, please contact us.