VASCERNs working group VASCA, EJP RD and Castor EDC have successfully developed and implemented a process for making a Rare Disease Registry FAIR from its conception – de novo. This means that data entered in a Data Capture Platform (in this case: Castor EDC) is automatically made FAIR and available in a Fair Data Point. The registry collects the Common Data Elements minimal dataset.
The paper, available in preprint on medRxiv, contains a detailed description of the workflow developed and refers to methods and documents available for reuse for other ERNs.
