Nowadays, data sources and valuable resources for research are scattered, unconnected, and do not speak the same languages, both from a semantic and from a technical point of view.
The Virtual Platform aims to open a single door to discover, query, and eventually access patient registries, biobanks, genomics & multi-omics repositories, knowledge bases, resources (such as animal models and cell lines libraries), omics deposition & analysis platforms, and translational & clinical research supporting material and services, in a coordinated manner.
The Virtual Platform is a federated ecosystem, in which resources are enhanced to be amenable to RD research, and made Findable, Accessible, Interoperable, and Re-usable: data stays at the source level but can be queyrable at distance from an EJP RD query point. As an ecosystem, multiple query points will be possible, allowing for sending interrogations from one resource to others. Thus, federated discovery, query, and analysis are made possible, preserving patient privacy, and respectful of each resource access conditions.
What are the benefits of using VP-Portal for research?
By using VP-Portal, researchers gain access to a wide range of interconnected resources, eliminating the need to navigate multiple platforms and sources. The platform's federated ecosystem enhances resource discoverability, accessibility, interoperability, and reusability, streamlining the research process and promoting collaboration within the RD community.
How can I find out which data resources are part of the VP Network?
You can see which resources and data sources are already part of the VP network by opening the VP Network resources menu. A short description and a link to the resources are provided. A picto indicates the type of resource (catalogue, registry or knowledge base) and whether you can query its content in depth.
Which search functionalities are provided?
You can query the data sources connected to the VP by name of disease, by ORPHAcode, by ICD-10 code, by OMIM number, by gene name or symbol or by HGNC number.
How does the VP Portal work?
Resources in the VP network provide a query end-point to their description and their content. When you search it, the VP Portal sends real-time queries to the connected resources so the results are the most up to date while the data remains at the source. The VP Portal maintains a directory of the resources’ endpoints, that whichis dynamically kept up to date.
Why should I log in?
Some resources (i.e. patient registries) require authentication to allow for deep queries on some of their data, while others (i.e. catalogues, knowledge bases) can be queried freely. Logging in will allow you to apply some search filters adapted to patient data, such as gender, age at, onset of symptoms or age at diagnosis) and to obtain aggregated results.
Are patient data and privacy protected when querying the VP-Portal?
Absolutely. VP-Portal prioritizes the protection of patient privacy and complies with all relevant data privacy regulations. Data remains at the source level, and queries are executed in a manner that preserves patient confidentiality and adheres to each resource's access conditions.
How the VP Network resources are selected?
The VP Network is composed in the first place by resources within the EJP RD project. You can see them at a glance in the MindMap. In the future, the VP Network will be extended to new valuable resources for RD research, willing to comply with the harmonization and interoperability standards adopted by the EJP RD VP.