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 aim is to expand our knowledge about the disease, to use information about epidemiological differences to gain a better understanding of its pathogenesis, and to foster better treatment for PH patients across the globe.

GoDeep features 

• 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 catheterization can join, and participation is free of charge. Only anonymised data is transferred, and the data remains owned by the PH centre which collected it. 
   
• The GoDeep dataset consists of c.350 parameters (measured at baseline and follow-up visit), including detailed diagnosis classification, co-morbidities, medication, right heart catheterisation, lung function tests, lab, and more. 
   
• GoDeep stores data in four 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. 

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 

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

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. 

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. 

To enquire about accessing GoDeep data, please contact us.