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Table 8 A summary of the identified legal 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 legal FAIRification challenges

Specific solution

How can machine-readable information consent be modelled?

EJP RD Consent Template

Which consent form should be used?

European level guidance on: Data Processing Agreements per database and countries; Agreements between EDC software and Hospitals that include multiple ERNs; ERNs Consortium agreement; Legal issues between countries.

ERICA project

How to implement EUPID within a registry?

Experts from the pseudonymisation tool group

What are the legal concerns about the EUPID implementation?

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