The term Common Data Elements (CDEs) was introduced by the NIH/NCATS Global Rare Diseases Patient Registry Data Repository (GRDR) program, which aimed to define those database fields (elements) that could be used in any rare disease registry.
CDEs help to standardise data entry and allow for harmonization, sharing and exchange of information across registries and diseases, as well as various analyses and studies. CDEs capture information with sufficient details that are needed for most clinical research on rare diseases.
Based on the comparative analysis among existing lists of CDEs, we developed a minimum dataset for patient data entry to be used in the RD-Connect framework.
Improving the cooperation among registries at European level will require continuous harmonization and alignment of the RD-Connect CDEs with the Minimal Data Elements developed for the CDEs of the European initiative EUCERD-Joint Action.
