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Table 7 A summary of the identified modelling 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 modelling FAIRification challenges

Specific solution

Which ontology is recommended for [X]?

CDE Modelling group

Are non-applicable CDEs mandatory?

Experts from the JRC for Common Data Elements

What if collected data do not follow the formats required in CDEs?

 

What if the CDE [X] is not well-defined?

 

What if Orphacode is not sufficient for [X] diseases?

Experts from the Orphanet group for Orphacode

  1. The first column lists the curated challenge, while the second describes the specific solution used to address that
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Orphanet Journal of Rare Diseases

ISSN: 1750-1172