Parnerships that matter.
The partnership between SYNTHEMA and ERN-EuroBloodNet is an important step towards improving healthcare for patients with rare hematological diseases (RHDs).
ERN-EuroBloodNet is one of 24 European Reference Networks established under the Directive 2011/24/EU. ERN-EuroBloodNet is a collaborative network that brings together individuals and institutions committed to improving healthcare services in rare hematological diseases. This network of healthcare providers (HCPs) is comprised of 103 HCPs from 24 EU Member States, all nationally recognised centres of expertise. SYNTHEMA benefits from ERN-EuroBloodNet’s resources and network which provides a wealth of valuable contact points and data in the rare haematological field. Moreover, this collaboration ensures that the project’s research is patient-centered.
ENROL, the European Rare Blood Disorders Platform conceived in the core of ERN-EuroBloodNet, is a patients Registry that aims at mapping RHD demographics, survival rates, diagnosis methods, genetic information, main clinical manifestations, and treatments at the EU level to obtain epidemiological figures and identify trial cohorts for research.
ENROL gathers pseudonymised patient-level data at EU-level, combining different sources of data, including existing registries and Healthcare providers’ hospital records.
Through this approach, ENROL aims at avoiding fragmentation of data by promoting standards for patient registry interoperability.
The partnership with SYNTHEMA will further encourage the harmonization of data sources, by leveraging domain-specific elements for RHDs defined in ENROL when establishing a harmonized data and metadata model for RHD. This will fast-step the standardization and sharing of data across Europe to advance translational and clinical research and care in RHDs.
In addition, SYNTHEMA will build upon relevant clinical, genetic, and epidemiological data contained in ENROL to provide a novel approach to generating synthetic multimodal clinical, omics, and imaging data for RHDs with validated clinical results, while ensuring GDPR compliance.
The partnership between ERN-EuroBloodNet and SYNTHEMA, especially through ENROL, is essential for advancing research in RHDs.
By contributing to data standardization and using novel approaches to generate synthetic data, SYNTHEMA and ENROL will enable researchers to gain a better understanding of RHDs, develop new treatments, improve the overall management of these diseases, and reduce the overall economic burden on European healthcare systems and societies.