EU-led network for rare blood disorders launches new disease registry

On the 1st of June 2020, The European Reference Network for Rare Blood Disorders (EuroBloodNet) launched The European Rare Blood Disorders Platform (ENROL), a new disease registry encompassing both already existing and new rare hematological disorders’ registries. The goal of the register is to combine all data and promote interoperability standards for EU’s rare disease platform patients’ registries. It will also map all data (demographics, survival rates, diagnosis methods, genetic information, main clinical manifestations and treatments) at the EU level in order to distinguish epidemiological figures and identify more easily trial cohorts for basic and clinical research. The online kick-off meeting took place on the 2nd of July.