The PVRI Annual World Congress 2020 in Lima attracted more than 300 people from 36 countries all around the world. During the conference, the PVRI GoDeep initiative was revealed, which I would like to elaborate in this blog.
PVRI GoDeep is a non-profit global deep phenotyping pulmonary hypertension (PH) meta-registry, spanning over all continents. It is open to all PH centres and based on a shareholder-model - every centre contributing patient data has a seat/vote in the GoDeep consortium. All members can use GoDeep data for research free of charge. Non-member academia and industry can access data for a fee, after review by the member consortium.
In the field of PH, many local/national/regional registries are already existing. So why do we need an additional registry and how is the PVRI GoDeep different?
- GoDeep does not replace existing registries. Rather, it is designed as a meta-registry and serves to link local/national registries through a common interface and data set on a worldwide level.
- GoDeep is thus global and not limited to geographic boundaries. Any PH centre is welcome to join, regardless of nationality or cohort size. Worldwide capturing of detailed PH data will provide a novel scientific angle to this field.
- With more than 200 parameters, GoDeep is more detailed than most individual registries. For maximum interoperability, all parameters are encoded in international standard terminologies (e.g. ICD-10, LOINC, SNOMED-CT).
- Quality control measures will be in place to ascertain reliability and comparability of data among the various centres/countries/continents.
- Joining GoDeep is simple. You don’t need to change anything with your existing software or registry. You don’t need to manually enter any data. We will configure the electronic connection/transfer of your data. If desired, data transfers can be automated. Regulatory, data protection and patient privacy issues are avoided, as all data is de-identified/anonymised before transfer.
- GoDeep is powerful. Members can use state-of-the art query tools, like i2b2 (see https://www.i2b2.org/software/) or OMOP CDM, to access the global data pool for scientific and epidemiological purposes.
- GoDeep has a long-term business plan. After the initial set-up period, the PVRI-GoDeep is expected to create revenue. All revenue will be used towards the running costs of this data repository. Should a surplus be generated, it will be used for scientific activities.
PVRI GoDeep was first publicly announced at the PVRI Annual World Congress in January 2020. We are still in the start-up phase, but as of February 2020, around PH 10,000 patients from UK, USA and Germany are already included. Our plan for 2020 is to connect more countries to GoDeep and increase the number of patients further to > 30,000 patients.