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

Table 6 A summary of the identified community FAIRification challenges and proposed solutions

Curated community FAIRification challenges	Specific solution
How other ERNs annotate disability questionnaire?	Disability survey
Exchange of experiences between ERNs registries	Exchange of FAIR experience
What tools and standards do other ERNs use?	Exchange of FAIR experience
Learn from advanced registries with examples	Exchange of information on a regular basis
How do other ERNs share data?	Exchange of information on a regular basis
How do other ERNs collect the following CDEs: 2.1 Date of Birth, 6.1 Diagnosis and 6.2 Genetic Diagnosis?	Share data dictionaries for identifying DCDEs
What database templates do other ERNs use?

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

ISSN: 1750-1172