ENROL has officially started last 1st June 2020, conceived in the core of ERN-EuroBloodNet, as the European umbrella platform for both new and already existing registries on RHDs avoiding fragmentation of data by promoting the interoperability standards for patient registries. ENROL's Principle is to maximise public benefit from data on RHDs opened-up through the platform.
ENROL aims at mapping demographics, diagnosis methods, genetic data, main clinical manifestations and treatments at the EU level. This will allow the collection of epidemiological data and will enable the identification of patient cohorts for engagement in basic and clinical research, thus enabling generation of evidence for better healthcare for RHD patients. To reach this aim, ENROL will connect and facilitate upgrading of already existing registries on RHDs, while promoting the building of new ones when lacking
Specific objectives are defined as follows:
It includes three main actions: a) establishment of the legal frame for enabling the sharing of data on RHD in the context of ENROL, b) establishment of links with existing EU-RHD registries including the analysis of their facilities to connect ENROL including strategy for data gathering and c) empower patients' community for their decision making process regarding participation in registries.
It includes two main actions: a) Establishment of ENROL's research protocol including common data elements for RHD, research questions to be answered i.e. Prevalence of each RHD disease group by country and revision of codification schemes for traceability and b) Analysis of the results of RHD data processing within ENROL and elaboration of (policy/epidemiological) reports.
It includes two main actions: a) Design the architecture of the database and develop the IT solution and b) Processing of RHD data gathered through ENROL Platform
