ENROL, the European Rare Blood Disorders Platform, has been conceived in the core of ERN-EuroBloodNet as an umbrella for both new and already existing registries on rare hematological disorders (RHDs). ENROL aims at avoiding fragmentation of data by promoting the standards for patient registries' interoperability released by the EU RD platform.
ENROL's principle is to maximize 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.
Accordingly, ENROL will map at the EU level demographics, survival rates, diagnosis methods, genetic information, main clinical manifestations and treatments in order to obtain epidemiological figures and identify trial cohorts for basic and clinical research. To this aim, ENROL will connect and facilitate upgrading of existing RHD registries, while promoting the building of new ones when / where lacking. Target-driven actions will be carried-out in collaboration with EURORDIS for educating patients and families about the benefits of enrolment in such registries, including different cultural and linguistic strategies.
The standardised collection and monitoring of disease specific health care outcomes through the ENROL user-friendly platform will determine how specialised care is delivered, where are the gaps in diagnosis, care or treatment and where best to allocate financial, technical or human resources. Moreover, it will allow promoting research especially for those issues that remain unanswered or sub optimally addressed by the scientific community; furthermore, it will allow promoting clinical trials for new drugs. ENROL will enable the generation of evidence for better healthcare for RHD patients in EU as ultimate goal.
ENROL has been submitted under the Call for proposals HP-PJ-2019 on Rare disease registries for the European Reference Networks and is currently under the evaluation process.