Coordinated access to FAIR data

Assuming that RD research data, samples and clinical information gathered from patients is typically distributed, heterogeneous and sensitive, we will progressively make RD resources FAIR at the record-level to support innovative basic, translational and clinical research.

By joint research, development, services and sharing of expertise we will enhance and apply extant capabilities to support RD data custodians, biobanks, and registries. Relevant standards will be identified and refined by a community wide effort, existing software will be improved to stress interoperability and functionalities needed by WP12 and expertise for practical FAIRification support and FAIR data hosting services for EJP RD projects will be leveraged via user workshops and engagement.

We will:

  • Identify, refine and expose core standards for dataset interoperability, asset (data, sample, subject) discovery, and responsible data sharing, concentrating on data level rather than resource level information, guided by the needs of EJP RD stakeholders from pillar 1 and 4, including ERNs towards the overall EJP RD objectives.
  • Improve and deploy open-source tools, by multi-site teams, made maximally interoperable and compliant with EJP RD agreed standards, to enable RD data to be made FAIR in practice.
  • Coordinate and deploy broad expertise and practical support for data ‘FAIRification’, including options for data hosting and brokering, with a path towards a self-propagating and self-sustaining ecosystem for provisioning of FAIR data stewardship.

Pillar2 proposal for ERN registries:  a document to help ERNs consider registry interoperability topics and how to work with EJP-RD on this: