The PVRI GoDeep Registry, led by PVRI President, Werner Seeger at the Justus-Liebig University Giessen, Germany, is a worldwide deep phenotyping pulmonary hypertension (PH) database spanning over all continents. The data offers insights into specific geographical and ethnical profiles of this disease. Furthermore, researchers can utilise the registry to identify possible study participants for clinical trials. Normal values, prevalences and incidences of specific pathologies can be derived.
The project’s objectives are to:
- Restrict data entrance to definite PH diagnosis based on right heart catheterisation.
- Profit from established PH registries of PVRI members in all parts of the world, who are willing to feed their data into this global Meta-Registry; support set-up or further elaborate local registries of key regional centres, if not available.
- Demand a minimum common data trunk to allow reliable diagnosis of the various PH classes and subgroups, recording of further essential data and assessment of treatment concepts, and clinical follow-up.
- Expand this trunk by collecting further deep phenotyping/genotyping data, which may initially be fed only by subgroups of centres, but in the long run provide an invaluable basis to approach individualisation of PH treatment on a much more sophisticated basis than currently possible.
- Establish a periodical automated data update from the local registries into the Meta-Registry, and therefore avoiding imposing any additional workload for the local registries once the interface is established.
- Provide, thereby, the PVRI with a) the largest deep phenotyping PH data bank worldwide, and b) the unique deep phenotyping PH data bank spanning over all continents and offering insights into specific geographical and ethnical profiles of this disease. PVRI will thus develop into the go-to place for PH specialists and companies addressing pulmonary vascular diseases around the world.
- Number of PH patients ~10,000
- Number of visits ~80,000
- Number of parameters/variables ~200
- PH diagnosis class WS2013/2018 Simonneau et al. ✔
- WHO functional class PH ✔
- Comorbidities ✔
- Survival & cause of death ✔
- Right heart catheterization ✔
- Spiroergometry ✔
- Echocardiography ✔
- Six-minute walk test ✔
- Lung function test ✔
- PH specific drug therapy ✔
It will be operating under the responsibility of the University of Giessen and, all ethics and data protection and data safety are under the control and responsibility of the University of Giessen.
Combining several current registries to an inter-continental meta-registry provides substantial added scientific value as it provides the most comprehensive approach to assess the global burden of PH, profiles the differences in PH categories among regions/countries/continents and various ethnicities, enables the comparison of childhood PH and early adult-onset PH which may be compared to late adult-onset PH, allows the assessment of regional differences in the “natural course”, allows questions to be asked beyond the scale of local registries, including “built-in” cohorts for cross-validation due to the leveraging of the “large numbers” in GoDeep.
Data from the Heart & Lung Institute in Giessen, Germany, Imperial College London, UK and from Johns Hopkins University, USA has already been imported, totalling around 10,000 entries.
Please find out more about GoDeep, at https://pvri-godeep-registry.org/web/htmlView/home.html.
If you run a registry, please contact us at firstname.lastname@example.org to see if you would be eligible to join GoDeep.