Now available: ENROL recommendations for interoperability!
The EU RD-CDS codification schemes have been used for the ENROL Rare Haematological Diseases Common Data Set (RHD-CDS).
The European Rare Blood Disorders Platform (ENROL) the umbrella for both new and already existing registries on Rare Hematological Disorders (RHDs), aims to avoid fragmentation of data by promoting the standards for patient registries' interoperability released by the EU RD platform, with the principle to maximise public benefit from data on RHDs opened up through the platform with the only restriction needed to guarantee patient rights and confidentiality, in agreement with EU regulations for cross-border sharing of personal data.
Standards governing collection, organisation, or availability of RD patient data have been lacking until recently, leading to large number of unstructured and non-interoperable sources of information at national, regional, and local levels that have been running for last decades. To achieve the FAIRification (make data Findable, Accessible, Interoperable and Reusable) of data and promote interoperability with the European platform for RDs registries fragmentation of data, the ENROL team have used the EU RD-CDS codification schemes.
ENROL recommendations on codification schemes for rare hematological diseases as an initial set of data standardization principles to ensure interoperability with ENROL are available on the website!
Have a look at this new document to stay updated on ENROL Rare Haematological Diseases Common Data Set (RHD-CDS) and recommended!