The de novo FAIRification process of a registry for vascular anomalies.

ABSTRACT:

Background

Patient data registries that are FAIR-Findable, Accessible, Interoperable, and Reusable for humans and computers-facilitate research across multiple resources. This is particularly relevant to rare diseases, where data often are scarce and scattered. Specific research questions can be asked across FAIR rare disease registries and other FAIR resources without physically combining the data. Further, FAIR implies well-defined, transparent access conditions, which supports making sensitive data as open as possible and as closed as necessary.

Results

We successfully developed and implemented a process of making a rare disease registry for vascular anomalies FAIR from its conception-de novo. Here, we describe the five phases of this process in detail: (i) pre-FAIRificat

SUBMITTER: Groenen KHJ 

PROVIDER: S-EPMC8418729 | biostudies-literature | 2021 Sep

REPOSITORIES: biostudies-literature