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Table 4 A summary of the identified training FAIRification challenges and proposed solutions

From: Towards FAIRification of sensitive and fragmented rare disease patient data: challenges and solutions in European reference network registries

Curated training FAIRification challenges

Specific solution

More information on ERDRI (added value, utility)

“Coffee rounds”” (ERDRI, Orphacodes, EUPID, Practical requirements, Practical implementation, Resource finder, Informed Consent, Disability and QoL)”

Documentation and specification of CDEs

Documentation of Semantic CDE Model

More information on CDE model (e.g. what is does, what is the added value, what would be the effort to implement it)

More information on ADA-M and machine readable consent

ERN Technical Workshops (Semantic CDE Model, EJP RD Metadata Model, EUPID API, Data formats and mapping languages, Phenopackets, Query builder, Orphacodes, DCDEs, PROMs)

More information on Beacon 2.0 (added value, utility, how to implement it)

More information on EJP-RD Metadata Model (what it does, what is the added value)

More information on EUPID (e.g. licenses, costs)

More information on FAIR Data Point (how will it work)

More information on Phenopackets (utility)

More information on Querying

More information on RDF Mapping Languages

What interoperability impact difference would be between using CDE Model and OMOP-CMD?

More information on FAIR

Rome Summer School

Ground rules for interoperability (e.g., terminology, personnel, connectivity mechanism, API definition sets, diagrams, and technology specification)

Virtual Platform Specification (VIPS)

More information on EJP RD Virtual Platform

  1. The first column lists the curated challenge, while the second describes the specific solution used to address that