Table 2.
Category | Definition |
---|---|
Training | Challenges related to inquiries for more information on a specific tool, standard, or a general concept |
Community | Challenges involving activities of peers in the same community to achieve reuse and prevent duplicated effort |
Modelling | Challenges involving the conceptualisation of data into data elements and bindings of standardised vocabularies to these data elements |
Implementation | Challenges involving implementation of a specific tool or standard |
Legal | Challenges related to inquiries about data sharing and reuse agreements, informed consent, or implementation of related services |
Five categories were created to organise the FAIRification challenges of RD patient registries. The categories reflect the nature of the challenges: the need for training, to learn from others, information about modelling, implementation, or legal aspects